Monday, November 29, 2010

Bionews Commentary

'The 'donated' generation': action now not formal apology later
29 Nov 2010. BioNews 586.
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.

1. The meaning of the term Donated Generation
Donated Generation | 18 August 2010
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
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

Sunday, November 28, 2010

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”
“Donor children seeking identity”
“Donor kids crave genetic identity”
Of which the Courier Mail one is in my opinion the better one.

Wednesday, August 18, 2010

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.

Sunday, August 01, 2010

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).

Sunday, July 04, 2010

Newspaper Article on Senate Inquiry

This is from an interview that I did for the Adelaide Advertiser:

Destroyed sperm donation records prevent family reunions
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.

Wednesday, June 23, 2010

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,
(iii) provision of appropriate counselling and support
(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.

Monday, May 31, 2010

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.