Australia leads the way, but......

I had a commentary on the Aussie Senate report published in Bionews.
Unfortunately their edits changed a few of the sentence meanings.
You can read the Bionews article here:
http://www.bionews.org.uk/page_89749.asp
but my unedited version is included below:

Australia Leads The Way; But Does It Fall Over At The Last Hurdle?

On Thursday 10^th January 2011, the Australian Senate’s Legal and Constitutional Affairs Committee tabled its report in Parliament on its inquiry into donor conception practices in Australia.

http://www.aph.gov.au/Senate/committee/legcon_ctte/donor_conception/index.htm

This was a landmark moment as it represented the largest and most comprehensive review in the world of the practice. The inquiry received submissions from all stake-holders (recipient families, offspring, donors, clinics, counsellors, legal bodies) as well as from individuals in the general community and special interest groups. The report made 32 recommendations to which a further report must be made in 2 years to ascertain progress.

One of the main reasons why an inquiry was held and also the same reason why the Federal Government may have difficulty in implementing such recommendations is that fact that constitutionally, the area of health has always been an area managed by the states. The patchwork of legislation across the states dealing with donor conception and assisted reproductive technologies meant that people around the country were being treated differently and afforded conflicting rights dependent on what state they were either conceived in or were receiving treatment in. This is irrespective of the fact that clinics operating in Australia must all follow the guidelines set out by the National Health and Medical Research Council for accreditation under the Reproductive Technology Accreditation Council that operates under the auspices of the Fertility Society of Australia. The recommendation that all states enact legislation and that all legislation be consistent is therefore welcomed. How this is yet to be achieved is one which the Senate does not readily have an answer as it declares that it will “pursue all available policy and political options” to achieve this. Given that the Federal Government was able to use its external affairs powers to enact the “Prohibition of Human Cloning for Reproduction Act 2002”, the move is not without precedence.

The recommendations are clearly focused on the wellbeing of offspring while also giving greater protection to recipients and donors who would also have greater access to information and counselling, as well as access to an ombudsman-like complaint process. A moratorium on record destruction as well as ensuring record preservation, not only provides the ability to match offspring with their progenitors and siblings, but also ensures good scientific practice that will allow medical research to be able to correlate a condition with source material or procedures. Both factors are severely disadvantaged under the various state prescribed medical record keeping practices which allow for destruction of these records even before the offspring has reached adulthood.

The reduction in the number of families able to use the single donor is a positive step to reduce the possibility of a consanguineous event. While supply is currently not able to meet demands and will be further diminished, the welfare of the child should never be held to ransom by market forces and is a correct decision. While mathematically the chances are small, in some Australian major cities where there are populations of not much more than a million people and everyone appears to be only separated by two degrees of separation, the mathematical models appear to fail at capturing the heightened risks.

The ability for parents to actively deceive their children about their origins as occurs in the majority of instances (Golombok et al. 2002, Lycett et al. 2005), has been reduced by the recommendation that birth certificates be annotated, thereby allowing the child to discover their conception status upon turning 18. However, it is hoped that the recipient family would inform their child well before this date in line with current best practice (Johnson and Kane 2007) to avoid the identity deconstruction which occurs with late discovery and the trauma that it creates (McWhinnie 2000).

The banning of payments to donors to maintain the altruistic paradigm of donating is somewhat perplexing when reimbursements are allowed to continue. Evidence presented by the clinics at the inquiry of approximately a hundred dollars for sperm donation re-imbursements can clearly be seen as inducement to “donate” when it is easy for a man to accumulate a few thousand dollars. A rose by any other name would perhaps have the term “re-imbursement” relabelled “payment”. It also does not follow the practice of blood donation in Australia which is completely without financial transaction and is more time consuming and invasive than sperm donation.

It was recommended that a centralised donor conception register be formed that would also implement a DNA database to assist those whose records have already been destroyed. It is imagined that this register and database would be comparable to the UK DonorLink register as it was referenced by the committee. Access to identifying information on this register would be voluntary and it was recommended that it would not be mandatory, nor retrospective. While the committee states that:

“In principle, the committee is also supportive of donor conceived individuals having a right to information about their biological heritage. The committee urges the states and territories to further consider the issue of retrospectivity in the creation of any national register.”

It is on one hand acknowledging the rights of offspring to know their kinship but also extinguishing it if the offspring was conceived before a certain date. The let out clause of states investigating retrospectivity is just that, as some of the states have investigated it previously and rejected the notion and are unlikely to veer from the status quo. With legal arguments of discrimination based on age and conception in addition to precedence of adoption retrospectivity (even though not entirely universal in Australia) and that of courts overturning privacy under child welfare principles, the government leaves itself open to a High Court challenge such as Pratten v British Columbia (Canada), which is still in progress. 

The landmark inquiry recommendations are a huge step forward for the welfare of people conceived via donated gametes and embryos in Australia and which would hopefully be mirrored in other jurisdictions around the world. Sadly it falls at the final hurdle in giving existing offspring parity with every other citizen in Australia, keeping their kinship, identity and medical welfare in limbo.

Golombok, S., F. MacCallum, E. Goodman, and M Rutter. 2002. Families with children conceived by donor insemination: a follow-up at age twelve. Child Development 73: 952-68.

Johnson. L., and H. Kane. 2007. Regulation of donor conception and the "time to tell" campaign. Journal of Law and Medicine 15(1): 117-27.

Lycett, E., K. Daniels, R. Curson, and S. Golombok. 2005. School-aged children of donor insemination: a study of parents’ disclosure patterns. Human Reproduction 20: 810–9.

McWhinnie, A. 2000. Families from assisted conception: ethical and psychological issues. Human Fertility (Cambridge) 3(1): 13-9.

Pratten v. British Columbia (A.G.) and College of Physicians and Surgeons of B.C.

Supreme Court of British Columbia hearing dates:  October 25 to November 5, 2010.

ILL-CONCEIVED LEXICON

One of the key problems in analysing donor conception in any format is the words we use to describe various components. It is also the meanings that we attribute to these words and their use in everyday language that also causes considerable complications for moving forward in this area. It would appear that our lexicon is playing catch-up with reproductive technology and it is the children conceived that are paying the price.

If we look at the word ‘father”

Webster’s dictionary 1828 edition describes the word as:

1. He who begets a child; in L. genitor or generator.

2. The first ancestor; the progenitor of a race or family.

3. The appellation of an old man, and a term of respect.

4. The grandfather or more remote ancestor.

Which shows that the word only had a genetic familial connotation an as a term of affection.

By 1918 the dictionary meanings expanded:

1. One who has begotten a child, whether son or daughter; a generator; a male parent.

2. A male ancestor more remote than a parent; a progenitor; especially, a first ancestor; a founder of a race or family; -- in the plural, fathers, ancestors.

3. One who performs the offices of a parent by maintenance, affectionate care, counsel, or protection.

4. A respectful mode of address to an old man.

5. A senator of ancient Rome.

6. A dignitary of the church, a superior of a convent, a confessor (called also father confessor), or a priest; also, the eldest member of a profession, or of a legislative assembly, etc.

7. One of the chief esslesiastical authorities of the first centuries after Christ; -- often spoken of collectively as the Fathers; as, the Latin, Greek, or apostolic Fathers.

8. One who, or that which, gives origin; an originator; a producer, author, or contriver; the first to practice any art, profession, or occupation; a distinguished example or teacher.

9. The Supreme Being and Creator; God; in theology, the first person in the Trinity.

We now have the use of the word being implemented for any male carrying out parenting duties. It could be argued that the dictionary had just become more concise and accurate or we could also argue that the usage of the word had changed somewhat and that these additions were needed. If we are to accept the latter then it could be postulated that the original use of the term is to describe the progenitor of child, the man responsible for providing the sperm. Typically this would also represent the man raising the child prior to the introduction of assisted reproduction technologies and more specifically donor conception. So in practical daily use of the word, they were one and the same and therefore implies that the original meaning of the word should be taken as being the male genetic forbear. Your father is the man who begot you AND the man that raised you.

However for donated people that role has been separated such that there are two fathers and two different men under current dictionary classifications. The progenitor and the man who acts as a parent.

With many men who raise DC children claiming that they are the only true father because they change their nappies and dry their tears they are trying to negate the presence of the progenitor father so that they can feel good about themselves and the fact that they are raising another mans offspring. By hiding from this fact they are having difficulty dealing with their own situation. They are also imprinting their own beliefs onto the child by belittling their genetic connection as well as making it more difficult to create the social and legal change required to recognise the rights of the Donated Generation. The ironic thing is that if a man was to raise another man’s genetically related child in any situation other than the state sanctioned medicalised process of donor conception, then society would use the word father to correctly label the progenitor.

The other main ill-conceived use of the English language is the use of the term donor. To donate is to give freely without receiving anything in return. Paying “donors’ or even providing re-imbursements which are also financial transactions we cannot technically use the term donor. Perhaps a better description would be “vendor” or “provider”. Even if he did not receive payment and truly donated altruistically, he would be the recipient parents donor and not the child's donor. Either way it still plays down the enormity and humanity of what has occurred. The sooner that we all refer to the sperm donor/vendor/progenitor as the man that he really is “father”, the sooner we can acknowledge the actual situation, move on, create meaningful change and begin to heal. And this applies to all parties within the DC triad.

Bionews Commentary

'The 'donated' generation': action now not formal apology later
29 Nov 2010. BioNews 586. http://www.bionews.org.uk/page_82853.asp
By: Dr Marilyn Crawshaw and Damian Adams
* Marilyn Crawshaw, adviser to UK DonorLink (UKDL), an Honorary Fellow and recently retired Senior Lecturer at the University of York and an independent researcher and consultant. (Speaking here in a personal capacity)
* Damian Adams, Medical Research Scientist, the Women's & Children's Health Research Institute. (Speaking here as a donor-conceived person)

Australia has, in recent years, had to face up to the social and emotional adversity caused by past policies. Formal government apologies have been made for the 'child migrants', 'the stolen generation' and the 'forgotten Australians'. These are the Barnardos and NCH children shipped from England to Australia, the Aboriginal children forcibly removed from their parents, and the Australian children abused while in state care.
Attention is now turning. A Federal Inquiry into Donor Conception is examining the plight of what Damian Adams has called 'the 'donated' generation' (1). These are the thousands of people conceived using donated gametes who have been denied knowledge of their biological kinship, heritage, familial health history and conception.
Australia is not the only place where this is happening. Olivia Pratten, a donor-conceived adult in British Columbia, Canada, is fighting for donor-conceived people to be granted parity with adoptees in their right to access records and identifying information about their genetic parent(s). She has taken her case to the Supreme Court. The eyes of the world are on that hearing.
In some legislatures, donor registers are being established, giving rights of access to information for those affected at the age of majority or thereabouts. In Australia, some states go further and have registers that facilitate voluntary contact between genetic relatives from birth onwards. They are increasingly well used, often by parents who are finding out how helpful it can be to have contact with a child's donor and other families who 'share' the same donor.
In the UK, the anonymity of donors was removed prospectively after April 2005 (2), partly because of a High Court challenge by donor-conceived adult Joanna Rose (3). Sadly, this was not made retrospective. Although those who donated between 1991 and 2005 have the right to re-register as willing to be identified, there has been no publicity to make them aware of this. This leaves as many as 25,000 people with no rights to identifiable information about their donor.
The plight of donor offspring born before legislation and mandatory record keeping was introduced remains dire. Those coming forward to seek information from fertility centres often find clinics have closed, their records have been destroyed or the clinic turns them away. Governments are failing to protect past records and the welfare of the associated offspring. In particular, countries are failing to address the needs of the older 'donated generation' who lack paper records.
The UK government has funded a pilot voluntary register called UK DonorLink (UKDL) (4) for these people since 2004. In the absence of paper records, it uses DNA testing to help identify possible links. This is complex and challenging work. While parentage is definitive, only the probability of sibship can be determined. This potentially leads to uncertainty and, also, variability as new DNA results are added to the database (5), but registrants report it offers them a window of hope instead of slammed doors.
UK DonorLink has been remarkably successful, despite limited funding and the difficulties of advertising to donor-conceived adults and donors from years ago. Well over 300 people aged from 18 to 70+ have registered or are in the process of registering. More than 30 people have been found to have a high probability of being related, mainly as half-siblings.
There is also a thriving group of registrants - donor-conceived adults and donors - who meet together, offer mutual support and provide advice to the staff about the development of the service. Before joining the UK DonorLink Register, many had never had contact with other donors or donor-conceived adults; UKDL goes some way to reduce that isolation.
The UK government has said the voluntary register should become permanent and has invited the UK's Human Fertilisation and Embryology Authority (HFEA) to run it (a decision is imminent), but its future remains uncertain. Yet the service it provides is vital. Unlike the HFEA services offered to donor-conceived people born after 1991, UKDL is not administrative-only. UKDL frontline staff have professional backgrounds in 'search and contact' work.
Delivering these services through administrative routes alone would be neither sufficient nor ethical for donor offspring or donors. UKDL staff report some registrants welcome support from professionals to help them through the process of registering, providing DNA, understanding DNA results, and making the multiple contacts that can sometimes result. For example, one group of 'highly probable' genetic siblings has 14 members so the next linked sibling will have to manage relationships with 14 new family members and family/friendship networks.
The world is starting to wake up to the idea that the responsibility attached to medical involvement in creating a child does not stop with conception. Internationally, there is an urgent need to provide long-term services - especially 'search and contact' ones - with sufficient resources and skill to meet the needs of all donor-conceived people, donors and their families. Waiting until there is another formal apology from governments later down the line before taking action is not good enough.

SOURCES & REFERENCES
1. The meaning of the term Donated Generation
Donated Generation | 18 August 2010
http://donatedgeneration.blogspot.com/2010/08/meaning-of-term-donated-generation.html
2. Human Fertilisation and Embryology Authority (Disclosure of Donor Information) Regulations (2) (S.I. 2004 No. 1511) | 2004
3. Rose and Another v. Secretary of State for Health and Human Fertilisation and Embryology Authority, Case no: CO/3802/01 (High Court of Justice Queen's Bench Division Administrative Court) | 2002
4. UK DonorLink
UK DonorLink | 29 November 2010
http://www.ukdonorlink.org.uk/
5. Crawshaw, M. and Marshall, L. ‘Practice experiences of running UK DonorLink, a voluntary information exchange and contact register for adults related through donor conception’
Human Fertility Vol. 11 No. 4 pp. 231-237 | 2008

Media Appearances

Having been in the media several times as a donor conceived person being interviewed for a story, it is a fairly common occurrence that there is something that I dislike about the story that can often give people the wrong impression about me or the subject matter. Actually it happens more often than not and there would probably only have been 3 articles that I have been interviewed for that have come across in a manner that I have liked. The wrong impressions and misinformation is also evident in the comments that people leave on-line. While there will always be people of different views and I respect that, it is just when a statement is made based on naivety that it really bugs me. Additionally, many of these stories just fuel their fears by spreading untruths.
For example a recent article had numerous responses saying that people are concerned that the offspring would come after the donor for money/estate. Well here in South Australia that cannot happen as they are protected by legislation from that ever occurring. Nor do I know of any adult offspring that have ever said that that is an issue for them, nor have I ever seen any offspring quoted as saying that that is what they want. It just doesn’t happen. Secondly they make comments that if anonymity is removed that the donor numbers will drop. Again, here in Australia the NHMRC guidelines which clinics supposedly abide by state that all donors now must be known, so again we have another misconception because that factor is already in effect.
I have since stopped trying to comment on stories that I appear in as I feel that it does little good in those instances. What I would like to see is that journalists report more accurately and stop feeding misinformation. Perhaps I might need to have a clause before giving an interview that a couple of things are included which set some of the record straight.

What is interesting and strange is that the story can appear quite differently in each of the syndicated papers.
Recent examples (same reporter, same date, slightly different content):
“The dilemma of the D-Generation”
http://www.couriermail.com.au/news/sunday-mail/the-dilemma-of-the-d-generation/story-e6frep2o-1225961914560
“Donor children seeking identity”
http://www.adelaidenow.com.au/donor-children-seeking-identity/story-e6frea6u-1225962069723
“Donor kids crave genetic identity”
http://www.dailytelegraph.com.au/news/sunday-telegraph/donor-kids-crave-genetic-identity/story-e6frewt9-1225962008880
Of which the Courier Mail one is in my opinion the better one.

The meaning of the term Donated Generation

This blog introduces the term Donated Generation, but why have I used it?
If we are to look at other groups of disenfranchised people that have had their kinship forcibly severed through institutionalised means, we have the Stolen Generation (of Australian Aboriginal children), the Forgotten Generation (of Australian children taken as wards of the state) and we also have a generation of children who were Child Migrants from WWII and who were not orphaned but taken from their families. Some of these forced separations went on for several decades, however these kinship separations have all stopped within a given time frame, leading to the term “generation” being used. Similarly in donor conception, a child is forcibly severed from biological bonds of kinship. The current ethos prevailing around a large proportion of the world (notable exception is the USA), is that it is acknowledged that knowledge of the donor/progenitor is important to the welfare of the child and that now at least these offspring will have access to identifying information once they reach maturity such that these bonds can potentially be partially, but never completely re-established (and that is best case scenario).
For those conceived prior to such changes in the paradigm, they may forever be left in limbo and forever separated from their kin due to poor record keeping, destruction of records or a maintenance of anonymity. As donor conception became mainstream in the 60’s and 70’s, and changes allowing access to identifying information starting appearing in the 90’s and much later as a whole, we have created a generation of donor offspring that will never know their true biological parentage and heritage. We have a generation of people who have been donated away by one or both biological parents.
The term “Donated” in this context, while I feel that it is an oxymoron, as in all instances there has been an exchange of money for the gametes and therefore does not classify strictly as a donation and would be better coined as vendor donation. It is the term that is widely used to describe this form of conception and is enshrined in literature, popular media and our society, therefore the term has been carried on here.
Yes there will always be children conceived through donor conception, however, it is sincerely hoped that current and future offspring will have far greater rights in regards to knowing their kinship. While the effects of forced separation will carry over into future generations as an indirect effect and can never be erased or ameliorated, the numbers of those that are directly affected by such barbaric practices of anonymity will diminish.

I never considered what I will tell my children...

This was a question that was posed by a DC offspring to many other donor offspring.
Here is my take on it as it happened to me very recently in part due to the article mentioned in the prior blog post.

It's funny that I was always glad that my parents started telling me from the age of 3 but it has taken me till my daughter is the age of 6 to tell it ALL.

Anyway, for some reason when my daughter was 4 she was able to pick that the paternal person on my side (stepfather) was not related genetically to me the same way my wife's father is to her. And then when she saw the picture of my Dad (deceased) she was able to work out that we were not related either as we had just been through all that you got mummy's eyes, daddy's hair stuff and the similarities between myself and my Dad could not be much more different. She basically wanted to know who my Daddy was in the same manner that I am her Daddy and my wifes Daddy is hers and from that context it was clear that the biological and sociological were linked in those situations but not for me. Somehow I managed to sidestep the issue and we moved on, but it was quite possibly the hardest question I have EVER dealt with because my daughter wanted to know who her grandfather was and why he wasn't in her life like her other one was. This completely broke my heart and it still upsets me.

Then just recently I appeared in a newspaper article that was on the Senate Inquiry being held here in Australia, how I helped to get it going and that I was looking for my father. Of course the title read something like "help me find my father". My daughter who was excited about the story and seeing herself in the paper noticed the title and asked the question.

So I sat down and explained a bit more of the birds and the bees (had a previous small talk about it), that went along the lines of describing how myself and my wife were able to have her and her brother but that my mum and dad could not do the same so they got a doctor and another man to help out.

She immediately says without any prompting, or any influence from me on this:

"So you are trying to find your real father."

Her exact words - they are burnt into my brain.

In one way hearing it like that from my daughter was incredibly painful but also soothing and reassuring at the same time.

It still blows me away how children see things in black and white for what they really are rather than all these layers of grey that us adults choose to put on top of things. She understands what it is about and I don't know why I didn't do it sooner (makes me a bit of a hypocrit really).

Newspaper Article on Senate Inquiry

This is from an interview that I did for the Adelaide Advertiser:
http://www.adelaidenow.com.au/news/south-australia/destroyed-sperm-donation-records-prevent-family-reunions/story-e6frea83-1225886396680

Destroyed sperm donation records prevent family reunions
KIM WHEATLEY
From: The Advertiser
June 30, 2010 8:09PM

DAMIAN Adams has welcomed the establishment of a Senate inquiry into sperm donations, although it's unlikely to assist with his lifelong ambition - to find his father.
The medical researcher, who was conceived at the Queen Elizabeth Hospital in 1973, will lobby for a national register, keeping proper records and greater rights for children born of donors.
But he is vehemently opposed to one of the issues being examined because of a nationwide shortage of donors - paying them money.
It still hurts him deeply to know that most donors at the time of his birth were Adelaide University medical students making some quick cash.
"It's affected me badly knowing that my father probably threw me away for what was effectively beer money," he said. "We don't pay people to donate blood or any other organs - it ends up being a commodification of human life."
All records of Mr Adams' father's identity were destroyed, yet clinics today can currently dispose of records after a specific time period, which can make it impossible to discover vital information such as health history.
The failure to keep records indefinitely riles Mr Adams, considering millions of dollars of taxpayer funding is spent on fertility treatments every year.
"Everybody else is entitled to know who their parents are but we don't," he said.
"But people from my era have sort of become second-class citizens ... you're not allowed to have access to medical history and you lose your identity, your heritage and family members."
In SA, donor offspring are able to access non-identifiable information about their genetic parent, but Mr Adams believes more information needs to be made available.
High on that list is being able to find out about siblings.
"I know of some people who have 40 or 50 siblings - but they do not know who they are - this is not pie in the sky," he said.
Mr Adams, who has two children of his own, is a member of the Donor Conception Support Group of Australia.
He is speaking at a national bioethics and health law conference in Adelaide this weekend.

Governmental Inquiries

Wednesday 23rd June 2010 was a very memorable day. Not just because it was 30 years since the first IVF baby was born in Australia, but because the Senate announced that there will be a federal inquiry into donor conception practices in Australia.
From the Senate Hansard:
That the following matter be referred to the Legal and Constitutional Affairs References Committee for inquiry and report by 30 November 2010:
The past and present practices of donor conception in Australia, with particular reference to:
(a) donor conception regulation and legislation across federal and state jurisdictions;
(b) the conduct of clinics and medical services, including:
(i) payments for donors,
(ii) management of data relating to donor conception,
and
(iii) provision of appropriate counselling and support
services;
(c) the number of offspring born from each donor with reference to the risk of consanguine relationships; and
(d) the rights of donor conceived individuals.

Not only did the federal government announce an inquiry, but so did the upper house of Victoria.
It is only hoped that the rights and welfare of children to be born as well as existing children are afforded the rights and ethical treatment that is currently deprived of them.

Genetic Genealogy Results Part 2

Since originally posting on this topic I have since conducted a Deep Clade test as well as increasing the number of markers to 67. Also in that time some people have also been tested that I have had a match with.
Firstly the Deep Clade test refined my haplogroup and turns out that it was slightly different than FTDNA suggested. The modal within my group however still points to an origin within England, Scotland, Ireland, Germany or Wales.
Before testing to 67 markers, I had a report of 2 matches at 37 markers of a genetic distance of 3 and 4 respectively (both with the same surname). Which is not startling but is reasonable. Upon completion to 67 markers, the extra 30 markers were exact matches, making a GD of 3 and 4 at 67 much more interesting. These markers that were different have a higher mutaton rate than other more common slow moving markers, so this helps add to a possible link.
FamilyTree reports that the probablity of us sharing a common ancestor is 96% within 12 generations, provided that we share the same or similar family names. Given that I do not know my paternity, my genetic family name may or not be this. However as the discrepencies in DNA profile I have between these people are different (ie. I fit somewhere in between them) and they have a known link then it is possible that this could be my paternal family name (but at this stage cannot be confirmed). There are further markers that these people have had tested that are not within my batch of 67, so I need to get these tested to see if the postulation still holds.

Fertility Treatment - Cure or Business Model?

The current trend in fertility treatment is the use of IVF and ICSI. So much so, that here in Australia, about 4% of all children born have been created this way. Or to put it another way, there will be one IVF child in each classroom. That is quite a large number.
While the causes of this can be numerous, apart from leaving things too late, one of the larger causes can be genetic problems. For example microdeletions in the DNA can result in poor sperm formation or low counts. ICSI can solve the problem of not being able to conceive but it does not “really” solve infertility as the person is technically still infertile. The same can be said with maternal problems. These treatments may give a couple the baby they so desperately crave, but it does not cure their infertility.
And when the cause was genetic in the first place, these treatments have just created another person who will also be infertile. But I hear people say that that person can then also go on to have treatment themselves. The problem is that by creating one or more offspring that will already be infertile rather than have it develop through age, lifestyle factors, disease, environment (the list goes on), we are increasing the proportion of people in the population who are infertile. So rather than treating and ameliorating infertility all we are really doing is exacerbating the problem and thereby increasing the burden on an already strained public health system that subsidises these treatments.
For fertility clinics it is a fantastic way of ensuring you will have customers in the future. Not a bad business model indeed.

Posthumous Conception

Posthumous donor-conception has come to the forefront of media and legislation as of late. Usually the attempts to follow this path are by a spouse or partner of a deceased who had stored their gametes with the expressed and written wish that said partner could use them to conceive a child after they had passed away. The loss of any life partner is a devastating occurrence and the fact that they wanted to conceive a child together but due to circumstances were unable to is just another heart-break for the partner to deal with.
So should these people be allowed to use reproductive technologies to conceive a child in this way? After all, both biological parents wanted it. The child will be dearly loved. What else is there?
Once again we need to put on our child eyed goggles and have a think what it might be like to be created this way. Knowing that your father or mother was already deceased before you were even conceived may be psychologically damaging to this child. Maybe not while growing up but it may manifest later in life. We know that some DC offspring have issues with being created “artificially”, so we can assume that some of these children may have issues with this too.
While some of the other issues surrounding donor-conception, such as anonymity, knowledge of your progenitor, identity and family health history are addressed in this scenario. The one issue that it fails to skirt around is that a child would be deliberately brought into the world without any possibility of having a relationship with one of their parents. This deprivation has been recognised to be harmful in the adoption community and as a society we recognise that both a mother and father are important to a child’s welfare. Are we once again putting the desires of adults above the welfare and needs of children?

Haplogroup Helps Define Ethnicity

I had another DNA test done to test my haplogroup through what is called Deep Clade testing.
It is basically to work out where your y chromosome originated from.
My result is R1b1b2a1b5 (or shorthand R-L21+ due to the marker that returned positive).
Does not look like much but this haplogroup has its origins in Ireland, Scotland and Wales.
So know when people say that I look Celtic I can confirm that my ancestors were indeed Celtic.

As for using this information to identify a potential father;
I could use this info to narrow down the medical student names to those that are of Irish, Scottish or Welsh descent. Although problems could arrise if there was any infidelity in these families. Or if they had migrated hundreds of years ago to somewhere else in europe before coming to Australia and subsequently their name may have changed somewhat in these other locales.
BUT it does give me something else to work with and it gives me a sense of belonging to a region.
While I do not have a definitive result of a more specific region or ethnicity (which is nearly impossible anyway) I am pretty happy about this result.
I have something more tangible than I had previously.

Donor Numbers INCREASE Since Anonymity Removed

The national governing body in the UK for controlling fertility treatment, the HFEA has statistics on the number of new donors of sperm and eggs to register and donate with clinics since 1992.
http://www.hfea.gov.uk/3411.html
These figures only show new donors and do not account for existing donors that may still be donating their gametes. We must bear in mind that donor anonymity ended in the UK in April 2005. Since that time the number of new sperm donors has gone from 250 to 384 in 2008. While egg donations (which has typically been associated with greater levels of altruism and less of a concern of anonymity), has gone from 923 (2005) to 1084 (2008), albeit with a drop in numbers during 2006. What the graph and figures show is that while the donor numbers can rise and fall over time, that since 2005 when anonymity ended, that the numbers of donors have increased and not decreased as we are made to believe by the lies that are perpetuated by some clinicians/clinics and the media at large that the removal of anonymity will cause a dearth of available procreative material for the needy.

Online Survey of Attitudes to Open Identity DC

An online survey is being conducted in association with the Concept Fertility Centre Perth and The University of Western Australia, to gather stake-holders (offspring, donors, recipient parents) views on open-identity donor conception. Currently there has been a good response from the latter two but they still need more information from the perspective of donor conceived person. The results will be presented at the Fertility Society of Australia's Conference in Perth in October 2009. So if you are an Australian donor conceived person (or even a donor or recipient parent as the more data the better) and haven't taken the survey please consider doing so. The results are extremely important in getting an idea of the perception of donor conception within Australia. The link to the study is:

http://www.openidentity.com.au/survey.html

All I Donated Was A Little Bit Of Genetic Material

The above quote and similar ones are statements that I often see made by egg and sperm donors/vendors to trivialise their input into the creation of child. This trivialisation is a vital component of their own psyche when dealing with their “donation” as the converse realisation is that they have given their own child away or even sold them as the case may be, which would then have the possibility to lead to deep psychological trauma. While it may very well be genetic material or a little piece of DNA, it is also known as selfish DNA and DNA that comes with strings attached.
But let us look more closely at this gift and the nature of gametes. Gametes contain half of the genetic information of its progenitor. This information governs your physiological features, it controls to a large extent your health and longevity, it also has a very strong component in influencing your behaviour and as strange as it may seem interests. So just from this we can see that a huge component of our lives is directly influenced by our father and our mother irrespective of who raises us. These are strings that connect us to our progenitors whether we like it or not.
We reproduce to transfer our own DNA into the next generation - to continue our line. And while many will procreate for the joy that it may bring which is the humanisation of having a child/family, it is resource expensive to do so. It uses up an incredible amount of time, money and effort to raise one child and is contrary to being a selfish individual that is only concerned with their own wealth (monetary, time etc). It is actually our DNA that is being selfish. The only way that it can continue to exist is for it to continue into following generations.
I have heard of many people state that it is a biological imperative for them to have children. Actually it is not, because their lives from a health and monetary perspective, is adversely affected by having children – they are a strain (a rather enjoyable strain at that). It is however, a biological imperative for their own selfish DNA that they procreate and pass on their genes.
What make us human as opposed to just animals is our complex family structures, our behaviours, feelings, culture and heritage. These family structures have, ever since man began (whether you believe in creation or evolution), been composed primarily of blood relations. Our culture and our heritage are birth rights that can only be transferred by those of blood, through our genes, through our paternity and maternity.
In essence it is not just a little piece of genetic material that has been transferred to a commissioning couple, it is anything but. It encodes and transfers to the next generation many of the features that make us human. This transference contains an undeniable and very significant link to the person it is derived from.

Genetic Genealogy Results

In an effort to compensate for the lack of heritage and knowledge of my genetic father that was forcibly imposed on myself by being donor conceived I undertook a genetic genealogy test from Family Tree DNA. While there are numerous companies offering such services, FTDNA was settled on due to having the largest database, a factor of great importance when trying to create a match with a potential distant relative. Once the testing kit arrived in the letter box it was a simple matter of collecting some buccal cells (cheek cells from the inside of you mouth) via a scraping, then sending it back to the testing company and waiting for the results.
The genetic genealogy test in regards to paternity works by following the Y-chromosome through the generations, as such, finding more information on your genetic donor father and your heritage through that part of your family tree is only possible for male offspring. Unfortunately female offspring are unable to do this. However, if they are a product of donated eggs they (as well as male offspring) could potentially follow the maternal side of their family tree through mitochondrial DNA testing which follows the maternal line. Both tests implement the premise that both the Y-chromosome and mitochondrial DNA are highly conserved and do not change when passed onto the next generation. Small changes do occur occasionally due to mutations and is the reason why we can then see who is closely related to each other through their DNA and why most people are related to each other if we go back far enough in history.
I purchased the Y-DNA 37 markers test from the option of 12, 37 and 67 markers on the recommendation of FTDNA with the theory being that 12 markers are not specific enough to verify a relation whereas 67 were supposedly too specific and that a certain degree of ambiguity is desirable when a person has no knowledge of their heritage or a genetically inherited family name (eg. adoptees and donor conceived).
These markers are assigned DYS (DNA Y-chromosome segment) numbers and a numerical value is returned based on which mutation has been detected in the test by looking for Y-STRs (short tandem repeats). It is these numbers which are used to match yourself with others that are related. From my results, FTDNA matched me perfectly to 4 other individuals at the 12 marker level, and to 2 others at a genetic distance of 2 at the 25 marker level. The genetic distance is a measure of how many markers are different and by what degree they are different. This was within the FTDNA database, however, it is possible to put you values into a wider database such as Y-SEARCH which allows people who have been tested by other companies to put their values online and to search for matches. The advantage of a database such as this is that it can be considerably larger and it allows you to conduct more thorough searches by changing the parameters to which matches are made which is not possible on the FTDNA site and subsequently, people that can be related could be excluded from being shown to you through the FTDNA results. Putting my marker values in Y-SEARCH allowed me to match to several individuals at more than 30 markers with a relatively small genetic distance. While it may at one level be beneficial to keep some level of ambiguity in your testing for those of unknown paternity. It can also create other problems in that by not being specific enough to confirm a close relation. From 37 marker results it is possible that someone that may appear close is actually quite distant at the 67 marker level, and conversely someone who may not initially appear as the main person of interest at 37 markers may be considerably close at the 67 marker level.
In addition to the marker values and possible matches that are obtained through such testing, a haplogroup can be assigned to your results. This haplogroup basically describes a part of the population that originates from a common ancestor through the use of single nucleotide polymorphisms (SNPs). As such depending on what haplogroup may be assigned to you, the region from which your paternal line comes from can be pinpointed or narrowed down. For example my haplogroup is most closely associated with the British Isles and Western Europe. This haplogroup can be defined to a greater level through Deep Clade testing which then has the possibility of further refining your ancestral origins to a region within these areas. My haplogroup assignment is also supported by the greatest number of matches I had of certain markers which define recent common ancestor origins to the areas of England, Scotland, Ireland and Germany.
So how do these results affect my knowledge of my heritage and my quest to find my genetic father?
In several ways;
First the matches that I have been able to make provide a basis to conduct further research. For those in the databases that have selected to allow their contact details to be accessible, they can be contacted and research can be conducted on their family history to see if there is a possibility of a closer link.
Secondly, the surnames (and their derivatives) that can come back as matches can be used by donor offspring to cross-reference with in my case names of medical and science graduates which comprised the donor pool at that time as possible avenues of enquiry.
Thirdly, any haplogroup assignment could also help narrow down the name pool of potential donors from the aforementioned donor pool based on certain family names originating from certain areas of the world.
The use of such testing has been used successfully previously with one donor offspring in the USA finding their genetic father by matching up with a close relative. There are also other companies which conduct health analysis of DNA. These tests analyse a person’s potential susceptibility to certain illnesses based on genetic links with these diseases.
The thing that must be noted is that any genetic genealogy result obtained is dependent on a close or distant relation also having undergone testing. While currently the greatest population of people undergoing such testing live in the USA, the British Isles and Western Europe, with more and more people being tested everyday, for those that may not get closer to discovering their heritage or even their paternity initially, eventually they may get there given time.
While I cannot show here the results of any matches as enquiries are ongoing, they have not excluded any of the information and lines of enquiry that I had obtained through other means before undergoing genetic testing. In regard to further genetic testing I may in the near future increase the number of markers to narrow down some of the potential matches if the line of enquiry deems that it would be of benefit. A further refinement of the haplogroup assignment by Deep Clade testing may also assist in this and will be assessed on its necessity as required. A full DNA “health” analysis is something that I will undertake to fill in the gaps of a family health history that I am missing. While genetic genealogy testing and DNA health analysis may not give to me the genetic father that has been missing in my life, it has the potential to provide for not just myself but also to my children a picture of our heritage (the origin of my paternity by region) but also a family health history which will be just as important to them as me.

Cheryl Miller Replies to my Rebuttal

This is my contribution to a back and forth dialogue on her article as a reply to her response:

I would like to see if Cheryl has any data (hard evidence) to support her assumption. I provided published data while she has made an assertion based on anecdotal evidence and a media beat-up of a story.

If appropriate measures are taken such as truthful, as opposed to fraudulent birth certificates then it will become impossible for recipient parents to hide their child's conception. This issue is far more complex than just accessing your genetic father or mother's identifying information. The ability to cause harm to a child should not be institutionalised to cater for would be parents. The child's welfare should always be of paramount concern. If in providing for the child's welfare we then thereby alienate potential donors (even though the data presented does not support this), then that is better than creating more harm.

The "whim" that I alluded to is the urge to have one parent being biologically related to the child. If this matters then it should matter to both parents, not just one, and conversely both genetic links should matter to the child. If a biological connection is disposable as is currently imposed on donor offspring then any connection should not matter to the parents also. There are countless children in need of adoption, but that in itself comes with it's own Pandora's box, not unlike the one we have opened here.

Here is Cheryl Miller's response to my rebuttal:

I agree with Damian Adams that the reasons for gamete donor shortages in Europe and Australia are complex. While bans on anonymity have played a role, so have laws limiting or prohibiting compensation to gamete donors (which many donor-conceived activists support) and donors’ growing fears that clinics cannot guarantee their anonymity. (Many donors were spooked when New Scientist reported in 2005 that a 15-year-old boy had found his anonymous sperm donor through a genealogy website.) Nonetheless, countries that permit donor anonymity—such as the U.S. and Spain—have not experienced shortages and are major destinations for fertility patients seeking a donor.

These would-be parents’ desire for children is hardly a “whim.” Donor offspring are right to fight for greater openness, but openness should not be their only goal. Indeed, as I noted in my article, the right to information does not necessarily lead to greater openness. A mandated registry might win offspring the right to know their donor’s identity, but if it means future parents are less willing to disclose their children’s status, it won’t be much of a victory.

The Problem with Retrospective Access

The issue of retrospective access to identifying information was discussed in the South Australian parliament recently. It was recognised at the parliamentary level that the donation of gametes was a good thing underlined by altruism. Yet these same politicians expressed concerns about what damage a donor conceived offspring's presence or knowledge of would cause the donor's (vendor's) existing family.

It made me wonder then why would you be worried about something showing up in your life if it was such a great gift that was composed completely of altruistic actions and beliefs. If the donor/vendor and or his family do not want the "return" of this marvelous gift then it can be interpreted that any number of these people view the act with either shame or with a negative slant.

The story propagated by the clinics and the media is that the donors (vendors) provide their gametes to an infertile couple to bring them great joy and to relieve their heartache. Surely it would give the donating progenitor the "warm fuzzies" to know that their unwanted child had grown up in a loving home because they were so dearly wanted by someone else. Yet the consensus within parliament is that this could adversely impact on this person and or their family.

So in the same breath parliament has stated that gamete donation is an altruistic gift that also has something intrinsically wrong with it.

Who Am I - A New Documentary

A new documentary called "Who Am I" is currently being researched by the people at Juggernaut Media. They are currently calling for interested donor conceived offspring from around the world that may be interested in telling their story. The difference between this documentary and all of the previous ones associated with DC is that this one is to be presented from the perspective of the conceived people themselves. This is very exciting and will make for ground breaking television in this field. The following is an advertisement calling for interest in this project:

WHO AM I?

How do you define identity? What role, if any, has genetics played in shaping the person you are today?

We’re SEEKING DONOR OFFSPRING to participate in an international high end documentary series on Assisted Reproductive Technology and the link between biological and genetic history and identity. What makes this documentary series unique is that it is told through the eyes of the offspring conceived through ART; your EYES.
We want to hear your stories; your perspectives; your insights into the impact of the technology that helped bring you into this world and your vision for the future.

WHO ARE WE?

Please allow us to introduce ourselves:
Tammi Michelle Faraday is a Television, Feature Film & Documentary Producer, Investigative journalist, Human Rights Lobbyist, Television Presenter, Broadcaster, and one time Senior Associate of an international law firm. Tammi recently returned to Australia after being based in London for two years working as a producer on critically acclaimed and award winning feature films and feature length documentaries for the BBC (UK), WGBH (United States), SBS (Australia) and Channel 2 (Israel). These include: "The Insurgency” (a BBC/WGBH feature length documentary about the Iraqi insurgency); “The Nuclear Wal-Mart" (a BBC Panorama investigation about the private international nuclear network); “Yitzchak Rabin - Case Unclosed" (a groundbreaking documentary on the late Prime Minister of Israel); “Rape on Trial" (a BBC Panorama investigation about rape and the criminal justice system in the UK) and the multi award winning feature film in Australia, “Wil".
In 2008 Tammi launched her international film production, media and communications company - Juggernaut Media Management.
Ros Tatarka is an established producer with an extensive track record primarily in television production. In her early career Ros worked on some of Australia’s most iconic television dramas including Prisoner, Neighbours and A Country Practice. She later went on to Associate Produce the mini-series Snowy and the first nine telemovies of the successful Halifaxfp franchise. As Producer her credits include the first series of Something In the Air, and the telemovie and first series of Good Guys Bad Guys, for which she won an AFI Award.
Ros was most recently engaged as the General Manager, Industry Development and Investment at the State Government Agency, Film Victoria. In this role, Ros headed up the business unit responsible for stimulating and supporting growth and excellence in the Victorian screen industry.
In 2008 Ros returned to the independent sector and through her production company, CreatEve Pty Ltd, is developing a slate of projects including feature film, television drama, documentary and new media.

For further information please contact Tammi Faraday on + 61 (0)401 952 962 or boss@juggernautmedia.com.au or Ros Tatarka on either +61 (0)411 567 556 or rtatarka@optusnet.com.au

Record Keeping - A Supposition

Normally I try and keep suppositions and conjecture out of this blog, however, recent conversations with politicians who were enquiring in regard to the record keeping of the time here in South Australia has led me to the point where we have to suppose what the intent was.

What do we know as fact? That record keeping and making in the early seventies in the hospitals were excellent. Everything that could be recorded was recorded and the records were kept. This is clinical best practice that allows for medicine to be practiced with the greatest care on the day and also in the future as we are to track down causation and effect events to improve subsequent treatment. An example of this is the post-natal treatment records for most children and mothers of the day which are large enough to fill their own small book. In regard to donor conception records, the only documents that have been provided are those contained on small pieces of paper with a paucity of information and the volume of which wouldn’t even be enough to fill up your back pocket.

What we don’t know. Are these poor DC treatment records the only records in existence? The clinics and practitioners of the time have been constantly changing their story in regard to these records, they were destroyed, they are lost, records weren’t kept or we do not have anything to link the treatment records to the donor records. Numerous doctors that I have spoken to who have been involved in the hospitals at the time find it hard to believe that either poor records were kept or that they have been destroyed as it does not follow the practice of the day. For argument’s sake we will assume that the clinics are being honest to an extent and that these small pieces of paper are the only records that have ever existed (provided that they haven’t been destroyed or lost) and that they are unable to link these to any donor records that may or may not exist. Why would the clinic go strictly against best clinical practices in not creating and keeping appropriate detailed records? It goes directly against everything doctors and nurses are taught from day one of their training.

While these clinics were operating in a hospital environment and in a clinical setting, the early seventies represent donor conception in its infancy here in SA and we could perhaps assume that they were operating more as a research facility undertaking experiments in medical and social science. As a scientist myself, I know for a fact that any research that is conducted now and in the past must be appropriately documented so that experiments can be verified and repeated as required. So what we have is a scenario in which the documentation that was being made within donor conception falling outside the accepted norm within either the medical or scientific fields. For something that was so important and supposedly ground breaking it is mind boggling to think that inappropriate documentation occurred.

If these practitioners and clinics were so lazy as to not create appropriate documentation then it is difficult to see how they could have gotten into those positions in the first place or how they were then able to carry on in the field for such a long time thereafter all the while receiving accolades after accolades. This is where we fall into the realm of conjecture. If we do not wish to follow the practices of the day and do not want to be able to go back over what was done, how, when and why to improve things in the future, we either have to be completely incompetent or we have to be hiding something. As mentioned previously, these practitioners and clinics either already were or they went on to be very successful, so they are definitely not incompetent. Is it possible to assume that it was intentionally done, to reinforce anonymity? That if there are incomplete or poor records then there is no way that the identity of the donor/vendor can ever be found out. And if they were worried about anonymity then they knew that it may become an issue for offspring in the future who would then seek out this information.

Whose Your Daddy? - a rebuttal.

The following post is a rebuttal and letter to the author Cheryl Miller in regard to her article:
Whose Your Daddy?

It has subsequently been published by ReasonOnline here.

I am certainly not against anyone having differing views to myself. After all that is what society is all about. However, when the whole premise of the arguement is based on error riddled information the value of such a perspective is lost. And unfortunately for those who do not know any better they would believe that the premise is based on fact, which it is not, and is a shame.

Dear Cheryl

The following letter contains factual information that is contrary to the erroneous claims made by yourself in your article “Whose Your Daddy?”

While many adult donor-conceived people are upset at the lack of forethought given to their emotions and thoughts on the issue in regard to the subject matter, the purpose of this letter is not to delve into these issues which some people may classify as debatable, but to correct the erroneous claims in a scholarly manner.

“In Europe and Australia, national governments created mandatory, centralized registries that activists succeeded in opening to the public, eliminating the possibility of anonymous donation. The result: Donors ceased to come forward in adequate numbers, and the waiting lists for sperm and ova have grown very long.”

Clinics will often parade these lines out in a scaremongering propaganda campaign to garner sympathy and to attract more donors but it is rarely based on fact. Numbers of donors for the vast majority of places around the world had been dropping for many years prior to any suggestion of the removal of anonymity and the creation of any registry. This is not a new phenomenon, however, the clinics would like us to believe that this is the case. A prime example is South Australia which is one of the only places in the world to actually have legislation that guarantees anonymity. This legislation was initially enacted in 1988, yet the numbers of donors have steadily decreased. This is the exact antithesis of your claim. If your claim as the removal of anonymity as being the major source of donor shortage then surely South Australia would have more than enough donors. Victoria, another state in Australia which has the most progressive legislation in the world on donor conception had an increase in donors the year after they banned anonymous donations and set-up a centralized register. Two clinics in the UK since starting an active recruitment campaign shortened their waiting period effectively to zero (an increase in donor numbers). The others that complained of shortages never took part in active recruitment. In New Zealand, their donor numbers also increased after anonymous donations were voluntarily withdrawn by the NZ clinics.
As you can see there are numerous examples that show that removal of anonymity and the establishment of registers does not necessarily equate to a reduction in donor numbers.
The reduction of donor numbers can equally be explained by the attitudes of men in that time as opposed to any restrictions placed on them.

“Since 1995 offspring have been able to find siblings through the U.K. DonorLink, a voluntary registry funded by the Department of Health.”

UK DonorLink was not in operation in 1995, it only came online in 2004.

“A recent U.K. government report found that the number of insemination treatments fell by about 30 percent in 2006, despite a small increase in sperm donors.”

The number of donor insemination treatments fell so drastically for couples due to the prominence of ICSI treatment. The lack of available donor samples is currently due to the newer trend of single-mothers-by-choice and lesbian groups.

“Many Europeans thought that by mandating a registry and banning donor anonymity they had solved the problem of offspring not having information about their biological parents. They soon found, though, that parents were getting around the ban by simply not telling their children about the circumstances of their conception.”

This is not new. This was THE practice for the majority of donor conception practices around the world until only recently. It has always been a practice that has been shrouded in secrecy and deception, patients were actively counselled not to tell the children.

“The program, started in 1983 by The Sperm Bank of California (TSBC), releases a donor’s identity to his offspring when the child turns 18. Scheib, along with the sperm bank staff, expected that most offspring would want to meet their donors, but few of the eligible offspring have chosen to.”

That would be obvious as the vast majority do not even know that they are even donor conceived. Your own article even states that in Sweden only 10% of offspring were told. Here in Australia a study showed that only 30% intended to tell – fewer ever do. A study by Golombok (1996) undertaken in the UK, Netherlands, Spain and Italy of 111 families using ART, 75% said they had no plans on telling. In New Zealand, 30% had told of 181 parents (Adair 1999), although many more said they intended to tell. In the UK 39% had or intended to tell while 61% did not. (Lycett 2005). In another study 85% of DI parents and 69% of OD parents, there was the belief that there was no need for the child to know (Murray 2000.) So the trend is definately not to inform the children and therefore it makes it difficult to seek answers to questions that you do not know exist. This paragraph of your article is misleading as it makes the assumption that the majority of offspring do not want identifying information. It is completely false as the research conducted by Mahlstedt et al to be published in Sterility and Fertility (accepted) shows that 87% of adult donor offspring wish to know the identity of their father, while 62% wanted to at least meet him once and 26% wanted to establish a relationship with him. So for the vast majority, paternal kinship is a very vital and important component of their lives that cannot be ameliorated by a simple medical file.
Your article leads the reader on a journey whereby the conclusion that infertile couples are being denied the chance to procure a child through a financial transaction is being hampered by the rights and desires of the offspring already created in this manner. Yet the data that you have used to support this claim, that of donor numbers dropping due to the removal of anonymity and the creation of registers (which for the vast majority there are no centralized registers accessible to offspring as yet, unless you are a Great Britain or Victorian and then only if you are born after a certain date) is not supported in fact. This claim is misleading and erroneous at best.

edited post: Someone asked about the study conducted in Australia, it apparently was conducted in the 80's at Prince Henry's Hospital treatment centre which then became Monash IVF. As I have been unable to locate it online as evidence I have included other studies that can be traced as further evidence of the trend not to tell all around the world.

Reconcilliation with the Term "Donor"

For some time now whenever I see the term sperm donor it sends the hackles on my back up, that is it creates a very uneasy feeling. It is the term that society is familiar with when referring to those children born through donor conception via the use of another man's sperm.
However the term donor is far from the truth. It in no way represents actuality, and the cold hard facts are that he sold his sperm, he did not donate. To donate is to give freely without receiving anything in return. Yet if we are to peel back all the warm fuzzy connotations in regard to sperm donation we are able to see it for what it actually is. It is a transaction whereby sperm is procured from a man and money is exchanged. It makes no difference if this renumeration is for time or expenses occured in providing their sperm. Money has changed hands making it a financial transaction, thus making the biological father a sperm vendor.
No matter how pretty we dress up the facade, donor conceived children were sold.
The facade of altruism and being wanted so much by our parents has no bearing on the loss that can be felt within DC children. Whether that loss be minute or large, resulting from a lack of medical history or the severing of kinship and subsequent loss of identity, it is a form of loss. Any form of loss is a form of suffering and suffering is never the goal of altruism.
While it is impossible to change the terminology that society uses to describe these artificial reproductive techniques, I will always be the son of a sperm vendor.

Amendments to the Reproductive Technology Act (SA)

The state government here in South Australia has recently tabled some amendments to the Reproductive Technology Act 1988. After checking over the amendments it was plain to see that the welfare of donor offpsring still wasn't being looked after. I contacted a newspaper about this problem who ran a story (a bit diferent to the perspective I was trying to push - but that seems to happen). During my interview he managed to push me into writing to every state politician about the amendments, as this appeared in print as such I couldn't be seen to be a liar, so I spent some considerable time writing to all 65 members.
The letter does not address all of the amendments just those that affect current donor offspring.

Dear ...................................,

I am writing to you in regards to the tabled amendments to the Reproductive Technology (Clinical Practices) Act 1988 and in particular the effect that the amendments and existing legislation have on donor conceived offspring.

I am a donor conceived adult, the product of artificial insemination conducted at the Queen Elizabeth Hospital in South Australia in 1973. I work as a medical researcher at the Women’s & Children’s Health Research Institute, I am married with a 5 year old daughter called Brydee and a 2 year old son called Angus.

The existing legislation states; “The welfare of any child to be born in consequence of an artificial fertilisation procedure must be treated as of paramount importance, and accepted as a fundamental principle.” While the amendments reiterate this; “The proposed bill will amend the Reproductive Technology (Clinical Practices) Act 1988 by ensuring that the 'best interests of the child' are of fundamental importance in the application of the act and in the provision of assisted reproductive treatment. However, neither the existing legislation nor the amendments achieve this goal. Instead the rights of the child are put secondary to the interests of others, thereby creating a class of second rate citizens that are being discriminated against based on their mode of conception. This discrimination also contravenes the United Nations Conventions on the Rights of the Child.

Of particular relevance is Article 8 which is as follows:
Article 8.1; State Parties undertake to respect the right of the child to preserve his or her identity, including nationality, name and family relations as recognized by law without unlawful interference.

To which I stipulate that without knowing who my donor is, I do NOT know my identity, I do NOT know my nationality from a historical perspective, I do NOT know what my name should have been (as this is usually obtained from your father) and I was NOT consulted as to whether or not I would like to have access to these basic human rights – they were taken away from me.
It was decided before my conception which biological bond should remain important to me and which one is disposable. The whole precept of donor conception as opposed to adoption is that it is widely acknowledged the importance for one of the parents to be biologically related to the child. By removing the child’s right to know who the other parent is, is hypocritical in nature.

Article 8.2; Where a child is deprived of some or all of the elements of his or her identity, State Parties shall provide appropriate assistance and protection, with a view to speedily re-establishing his or her identity.

It is obvious that the state of South Australia in almost 40 years of widely practiced donor conception has done very little in fulfilling this article of the convention. I have been trying to establish my true identity for well over 16 years without any assistance by the state government and am no closer to achieving it.

Of particular concern in regard to our current legislation is that it acknowledges that the welfare of the child is paramount, but it also acknowledges that a donor can remain anonymous. These are two situations that are mutually exclusive. It is widely reported in internationally recognized publications that the best interests of the child are served by knowing who their donor is.

To know where one comes from is a basic human right and can sometimes be tantamount to the emotional welfare of the person involved. This basic human right has widely been acknowledged and given to those children that have been adopted. It has been shown that the ability to access this information is of utmost importance to the welfare of the child. Legislation allowing adopted children access to this information, while preventing those of the “Donated Generation” from doing the same is discrimination, pure and simple. These rights, as granted to adoptees was made retrospective even though relinquishing parents were promised anonymity. Which is exactly the same situation as found within donor conception. It is unfair and unjust to treat one group of individuals one way and another group differently. A precedent has also been set within the Reproductive Technology Act 1988, wherein clauses within it were made retrospective in regard to anonymity when for people like me there were no legislated guarantees when I was conceived. It is also precedented within the Family Relationships Act 1975 wherein the infertile husband of the wife receiving treatment was deemed within the law to be the father of the child and was also made retrospective. Both these examples show how I personally (and many others) have been disadvantaged by retrospective legislation in regard to our basic human right to know who our father is. So it would be incongruous to stipulate that retrospective access should not be given to the donated generation.

Due to NH&MRC guidelines and RTAC regulations, the current children born as a result of donations are able to access identifying information (upon maturity) about their donors. This in effects creates a disparity between offspring of various ages. My ability to know the identity of my father is being discriminated against because of my age. Age is a clearly defined anti-discriminatory clause in our legislation, yet it is allowed to happen to thousands of donor offspring.
The current situation for donor conceived people in regard to their birth certificates is that both the infertile and their fertile partner appear as both the biological parents. A birth certificate has always been used as a factual and truthful document showing the lineage of a person. For a donor conceived person that is clearly not the case, the document is untruthful and fraudulent. As the state assists with the process of donor conception and accepts the details as written, it is being complicit in creating fraud. There are numerous models that would facilitate all parties and show the conception status of the person.

More and more current research also shows that many of our traits and characteristics are not the product of the environment in which the child grows, but is a result of genetic inheritance (40% of our behaviour is inherited, Malouff J., University of New England, 2008). As a result, the knowledge of ones genetic background is paramount in finding out “who” we really are. Being able to access ones family health history has numerous health benefits to the individual as well as the state. This knowledge will equip offspring with the opportunity to prevent or ameliorate genetically inherited diseases such as chronic heart failure and diabetes which cost the state millions of dollars each year in treatment and hospitalization. As it is the states hospitals and health professionals are under increasing stress, by allowing donor offspring the chance of perhaps finding out their family health history will only help reduce this burden on the health system from both a physical and mental health perspective.

In a recent study presented at the American Society of Reproductive Medicine Conference, November 8-12 2008, in San Francisco by Patricia P. Mahlstedt, Ed.D., Kathleen LaBounty, B.A., William T. Kennedy, Ed.D., it was shown that of 85 adult donor conceived offspring interviewed worldwide that 87% believed that they should know the identity of their donor (accepted for publication in Sterility and Fertility in early 2009). In another study (yet to be published/presented, results transmitted to myself by one of the authors through personal communication), of 109 adult DC offspring 85% stated that they should know the identity of their donor. These studies show us quite clearly that offspring view the knowledge of their donor’s identity as being extremely important to them.

The tabled amendments also call for the disbanding of the South Australian Council for Reproductive Technologies which in my mind would be a mistake. With the exception of not including an expert that represents the best interests of all children born through these technologies, the council contains experts in all other fields of reproductive technology. By disbanding this council and putting these issues in the hands of a Health Advisory Council which would contain people that are more akin to jacks of all trades, masters of none, will severely hamper future progress.

For myself, the issues associated with being donor conceived only became cemented once I had children of my own. It was only when I was holding my babies in my arms, feeling those deep emotions that parents feel when their children are born that I was able to truly appreciate the importance of genetic kinship and in effect what was deprived of myself. That reality is as emotionally crushing today as it was years ago.

Thousands of donor offspring are being treated as second class citizens with inferior rights to everyone else. We do not asked to be treated differently or special, we just wish to be treated the same as everyone else, as human beings with dignity. As without these rights we have no dignity but are just lab rats in an experiment in social science.

I implore all parliamentary members to table their own amendments to ensure that donor offspring are treated with the compassion we deserve.

Yours Faithfully,
Damian Adams
“My daughter wants to know who her grandfather is and it breaks my heart that I cannot give him to her. The effects of anonymity and donor conception will not stop with me but will continue into future generations just as it does for adoptees.”

Distress Over "Anti-DC" Comments

I have seen numerous comments recently that are mainly from recipient parents that are distressed over the statements of dissatisfaction and feelings of pain that some offspring have. In particular there seems to be a common theme of concern that their DC children will also feel this way and may also harbour some sort of ill feelings towards them.
As a father I can certainly sympathise with this in that no caring parent would deliberately do anything that would cause their child harm and that the child would then bear a “grudge” or the like against their parent. I think every parent would naturally harbour these fears.
I for one certainly do not have ill feelings towards my parents for their course of action even though it has caused considerable pain. I love them very much. I do not blame them for it even though I wish that was not the method to which I was conceived (I do not wish to go into the argument of then not existing here).
My negative statements towards donor conception is not born out a perverse desire to upset wanna-be and existing recipient parents. They are quite simply there to make people think more deeply about the subject and to look at it through different perspectives.
For myself personally it would have been far easier emotionally if I had stayed happy and grateful about being DC. It was a much more difficult, painful and emotionally taxing journey to come to my position and conclusions. The “epiphany” that I had about DC when my daughter was born was by no means a happy moment but an extremely distressing one.
I know that not everyone will agree with me and it would be a pretty boring world if they all did. There are many offspring that are happy with their conception, and that is great for them, but for every child that has some sort of problem (loss of identity, medical history, kinship separation etc) we are adding to a generation of suffering to which as a society we are not learning from.
In some ways I wish I could go back and be happy and ignorant once again, but to do so would require me to discard everything that I know and love about what it is to be human.

Interview for the New Atlantis

The following link is for the interview I did for Cheryl Miller of the New Atlantis (A Journal of Technology and Society).

Part One:
http://www.thenewatlantis.com/blog/conceptions/questions-for-damian-adams-donor-conceived-adult

Part Two:
http://www.thenewatlantis.com/blog/conceptions/questions-for-damian-adams-donor-conceived-adult-2

Donated Generation - The Article

Absolutely fantastic comprehensive article on DC practices, ethics and outcomes by Cheryl Miller of the Phillips Foundation.

http://www.thenewatlantis.com/publications/donated-generation

If only more articles were so well written then perhaps we would see greater progress in recognizing the rights of offspring.

Website for Offspring Seeking Their Genetic Fathers

http://www.searchingformyspermdonorfather.org/
This website was set up in an attempt to assist any donor offspring in locating their donor father. Each offspring has their own subpage with details about themselves so that anyone who is a donor or someone who has info that may be of interest can determine if there is a possible match and have means of contacting these individuals.
(Please bear in mind that any offspring may not necessarily look like their donor father)

Changing the Paradigm

Currently in our society it would appear as though the needs and desires of the adults are always trumping the rights of the children. When I speak to people they all confirm that the rights of children should be paramount, but yet when we look at our society and in particular the practice of fertility treatment then it is anything but.
We need a shift in the current paradigm where we stop focussing on heartbreak of the infertile, however tragic that is and focus on the welfare of the child that is to be created in this manner. This is not to make light of infertility, but an attempt to protect the rights of the most vulnerable, the child.
How can we defend ourselves by saying that the child will be wanted and loved when unconditional love means that as a parent or would be parent we will do everything in our power to ensure that our children are not emotionally or physically hurt by our own actions. Donor conception can almost be seen to have parallels with Munchausens by proxy, whereby we want the attention and love that a child can give us but to get that we have to create a situation that has the potential to cause long term trauma to that child. This is not to suggest that the would be parent wishes to intentionally hurt the child, it may however be a by-product of the situation that is forced upon that child.
If we afford the protection children deserve than the rest will look after itself, because nothing else really matters.

Should Recipient Parents Undergo Adoption Proceedings?

This is a very complicated question in that some people may not view donated gametes in the same light as a donated embryo. In any context however, one or both of the recipient parents is not the biological parent of the resultant child. So what does that make them? A social parent is a term often used but it is term that does not convey the exact nature of the relationship. In the majority of instances the infertile person or couple will raise the child as if it were genetically their own. They in effect have adopted the child as their own, so why shouldn’t they follow proper adoption proceedings?
A child that has been conceived and carried in the womb of one woman under normal circumstances and then relinquished and raised by another woman or couple is adopted. So why should it be any different if the child was carried to term in the raising mothers womb in the case of donated embryos? Does incubation entitle her to claim that the child is hers even though it does not contain any of her DNA? Certainly the foetus will form a strong bond with the incubating mother, however, that does not affect what is at the core of the child and makes it unique, its genes.
Would gamete and embryo adoption prevent recipient parents from deceiving the DC child about its origins? Possibly not seeing that not all adoptees are told about their status either, but perhaps it may make them think twice about keeping it a secret.
With DC children currently suffering worse human rights than adoptees in regard to knowing their biological parents and heritage (particularly in the majority of states in Australia), by not making recipient parents undergo adoption proceedings the child has had its basic human rights infringed upon simply based on their mode of conception. Forcing the recipient parent or parents to follow adoption proceedings would more accurately acknowledge the true relationship between the recipients and the child while also providing the child with their inalienable human rights. After all it is the child whose welfare should be paramount and over-ride any desires or wishes that any adult has as they by far are the most vulnerable in this situation. This is not to say that adoptions as a whole should occur, as no child should be separated from their family except in extreme circumstances. Yet when we look at the exact relationships within a family that has utilised DC and how these children are currently viewed by the law and the rights afforded to them, then adoption of the gamete or embryo is a more accurate reflection of the situation.

Selfish Parenting???

I can’t help but think that when I read about the reasons why people choose to keep a child’s conception secret that they are being selfish. The secret is there purely to serve their own interests and are an attempt to avoid any conflict or strain while implementing a false façade of a traditional nuclear family.

After spending a relatively short period of time parenting myself, I have come to the conclusion that the whole concept of parenting is that it has absolutely nothing to do with the parent themselves and everything to do with the child. The needs and welfare of the child are paramount and those of the parent are subservient or even non-existent. This is the way it should be and is the quintessential model of true parental love. Yet it appears that in many ways that under donor conception practices and typically those keeping “the secret” that this model is turned upside down and that the needs of the parent is now above those of the child. Perhaps the intense drive to procreate and the emotional rollercoaster of infertility un-balances the scales and resets a parent’s ability to determine whose needs are paramount as the focus has been on their need for so long.

Deception of ones origin is never in the best interests of the child. The damage that can be done down the track when “the secret” is inadvertently or accidentally revealed may never be undone. Yet is just keeping “the secret the only part of selfish parenting”?

The question then would follow is: “Are people that choose to have a child via donor conception being selfish because of the possible implications for that child?”

Is the deprivation of a child’s identity, heritage and kinship with their genetic father/mother, siblings etc ever in the best interests of the child? By putting the desire to “have” a child above the welfare of the child we are once again tipping the scales towards selfish parenting. After all you never “have” a child, they are not objects to be owned, as parents we are merely guardians of another soul.

Is Love All That Matters?

Many people state when utilising donor conception or adoption that love is all that matters. In a very simple world it would in some ways be nice if it was. But the world, our lives, our relationships and our families are anything but simple.
If love is all that matters, then why are divorce rates so high? These couples were so in love with each other that they got married but they then developed irreconcilable differences and they can quite often end up being very bitter towards each other. It is a sad and simple fact that not all love is permanent. What is permanent however, are biological/genetic connections. These can never fade or be erased. You are either related to someone through blood and genes or you are not. This is where the phrase blood is thicker than water originally stems from. Biological relations who sometimes experience difficulties will come together in times of need, where non-biological ones would not. It has formed the basis of our culture and our humanity for thousands of years, yet donor conception attempts to degrade this foundation by eroding the physical and emotional connections between a donor father/mother and their offspring.
Adults will do anything for their own children including giving up their own lives but they very rarely would do the same for another couples child. Why? It is the preservation of the next generation, the continuation of your genes and the keeping of the family unit. Donor conception blurs the edges of the otherwise definable family unit. No longer are the raising parents always the biological ones, who on the other hand are lurking in the shadows. Perhaps never to be seen or heard, yet forever present. Can love help smooth out these blotches in the family unit? Sometimes it can but if the relationships within this unit become strained for whatever reason, the foundation can be eroded even further. This has adverse consequences for both the child and non-biological parent.
When we see that numerous donor offspring are experiencing emotional pain from kinship loss, incomplete identity and family health histories who are also from families that are still intact with all parties that love each other we have to question whether Love Is All That Matters.

Donor Conception and Counselling

This area gives me a great deal of concern. All people wanting to undertake a donor conception program are usually required to undertake at least one counselling session. All fine and good. The problem is that the counselling session is provided by the clinic with their own counsellors. There is a complete conflict of interest here as the counsellors have a vested interest and are not impartial to the whole process. Their very job is dependent on the clinics getting enough patients to pay their salary. So it is not in either their own or the clinics best interest to turn prospective patients away as being unsuitable or to provide them with every bit of information on the subject which may persuade them to change their minds about pursuing that course of action. Their best interest is obviously to have as many photos of happy couples holding their new bundle of joy up on their clinic walls.
This may seem to be a cynical view but when you consider that counsellors are rarely if ever seen at donor conception conferences that involve stories or reports of offspring and their experiences, they do not inform the prospective parents that there is a possibility the child may be unhappy with their conception, and they do not offer follow up sessions 1, 5 or 10 years down the track to determine how things are doing then this cynical view is pretty close to the truth. It would be assumed that they too would have learnt from the experiences of the adopted generation but they have failed to listen. They claim to always have the best interests of the child at heart but obviously the heart has failed to communicate this belief to the brain.
If donor conception is to continue then surely independent counsellors should be employed by the governement rather than the clinics, ones that are educated on all the issues surrounding DC while providing more than one session in the early stages and also be following up in the years to come.