Thursday, September 27, 2018

A Year On After Finding Out They Were Donor Conceived


The following is reposted with permission from the author Cassandra A. These words are not mine but hers. I enjoyed this post immensely and asked if I could cross-post it in this format. It is a long post but well worth the time.



"I am one year old. One year. It has already been one year. Yet it has only been one year. 35 years of one identity, one year of another. I am still only beginning, and I still have a lot to learn about an identity I have always had, and how Cassandra came to be. A trauma is a difficult thing to navigate: Intentional deception means losing trust in the people who first taught you what trust means. An exchange of money able to purchase away an ethnicity gives question as to what identity even means. To overcome years of shameful secrecy is something for which there is no timetable. Over the last year, I lost my entire family in one form or another. I lost friendships: whether friends were unable to handle the weight of the issue and so abandoned ship, or stayed and tried, or stayed and understood even as usual topics of conversation dramatically changed, or saw me go through some pretty crazy transformations, or whether they could not comprehend the losses of the journey and hence the job of back and forth explaining became too tedious on all sides, or whether they unintentionally made me feel more alone and misunderstood...or whether I could not tell them at all. All relationships changed somehow. I even lost a part of my daughter. A sense of recognition. Countless mental health professionals have admitted to never having met anyone in this situation, and often have very little knowledge surrounding the complex issues it creates. They may have little ability to validate in a way that is not based on the societal cliches that are actually a part of the problem. All these situations have caused, in their own ways, further isolation and trauma during a time that was already incredibly transitional and emotionally vulnerable, for countless reasons, even before this date last year. I am a very trusting person who now deeply trusts virtually no one. When you are forced to learn about the history of the ways we 'buy and sell' human beings, that will happen. In learning that, it pains me to say, it became a date that rivaled even the day I became a mother in terms of its significance in my life. The worst day of my life. The best day of my life. The best thing to ever happen to me: the trauma of the Truth of my life and my existence. The day I learned I could be free. Free to be who I am and who I have always been. Free to put the pieces together, for me and for my daughter. I have relived every age and stage. I will continue to do so for the foreseeable future. I will be okay. I am grateful. I am still ME, painfully so, but I will never be the same again. So much of what was left of my innocence, trust, and love was wiped away. I say again: 35 years of one life, one year of another. It has only been a year, though I almost can't remember a time before this was true; past memories seem so distant, while the present is so vibrant. Even in gaining myself, I have lost myself thousands of times over. I can't even recognize my own heartbeat. Yet somehow, that has been the only thing I can follow and the only voice I can heed during the last year, as untrustworthy, fake, foreign as it often feels. I am the only one who can lead this journey. And what I have gained: again and again, The Truth. I have gained new families: I have gained a community of people who have me feeling more than ever that I have found 'my tribe.' It is rare to find someone else who can comprehend what has happened to me, to us. It is so often only our community who can fathom the full extent of this nightmare. They have saved my sanity, made me realize I am not a freak nor a shameful secret. I have gained new family and a greater understanding of who I am. A greater understanding of who our daughter is. The joys I have received and been utterly blessed with in the last year are things that no one should have to be *blessed* with. They are the results of denied human rights. In a life of loss, I lost things I never knew humans could lose; I was naive. And I have spent time this last year making sure at least a little corner of the world is aware of it. I'm not ashamed to say all of this, though those who are likely ashamed to read this can't see it. I am forced to hide who I am. My life -- my identity -- is still somehow a shameful secret. I don't care. I'm fighting to disprove that by sharing bits and pieces of what I can with who I can. To shed the 35 years of trauma. To try to prevent this trauma from happening to the next generation through advocacy and open discourse and education. The last year has been spent meeting and forming friendships with new people, learning about new friends and family, contacting legislators and journalists and public figures, engaging in heated discussions with hundreds of people to try to change the prevailing thought process, networking with all of them to try make sure this scenario doesn't happen to anyone else. A year of art, writing, and advocacy. Because, when you see fellow human beings who have physically suffered, had inaccurate and delayed medical treatment, who have died as a result of having no access to accurate health history, who suffer on a visceral emotional level, who have suffered a primal wound and a form of psychological abuse from those they love the most, you need to act. Do not lie to your children. Shame and secrets keep us sick. Long term, massive lies and delusions can cause C-PTSD. Trust is lost. Don't lie to your children about who they are. Information about a person cannot ethically be held from that person. ANY integral information. Whether you know my story or not I hope my messages get across... that we all have the fundamental right to our own bodies. I will never look at $35 or $100 the same way again. Be grateful if you can look at childhood pictures without feeling sick, without feeling like a fraud. Be grateful if you don't have to worry about 'coming out' and the people closest to you desiring for you to keep the most basic facts about yourself and your identity a secret, because of their shame. I almost don't remember anything else being true; this has always been. Yet moments it remains completely unreal. Over the last twelve months I have learned more about the manufacture and the buying and selling of human beings than anyone should have to learn. It shouldn't happen that people have to learn about this; and yet we do. I've learned more about something many consider a legally- and socially-sanctioned lesser form of child trafficking, and the ways we as a society have found to justify certain forms of it through ignorance. To have a year of being talked about like a product, a purchase, a mystery... to have to prove to strangers, to myself, and to the people closest to me that I am in fact fully human in every sense of the word, except for how I have been treated. I was thrust into a world I did not know existed, a world I had always been an unknowing and unwilling part of, a sort of experiment in a world I can unfortunately now talk to you about all day every day, because I have lived it, educated myself, and been educated, in it. I learned about stigma and also about a sweet-talking industry that paints light to cover over the darkness it has created. I now live in this unimaginably pervasive brave new world; I now live in this surreally functional brave new body. Filled with the capacity for so much love, squashed under the weight of mistrust. This is MY story now, and while others' shame is respected, it has to be secondary to my message and my story about children's human rights. Appreciate your rights. Appreciate what you take for granted. Appreciate privilege. I am thankful for my fellow travelers who understand how the best thing to ever happen is also the worst, most traumatic thing to ever happen. The discovery makes life, and my past, make sense, as I work forward and backward in integrating the pieces. It is an experience that brings forth unimaginable waves of emotions that did not exist within me before last year, emotions that the human mind and human heart do not have the pathways to experience until they are forcibly created in processing such a trauma. It requires deciphering the complexities of what makes us human in the first place and what that means for our bodies and for our rights. I have spent so much time dissociating, an effect reflecting the pain of the realization that my whole life has been one of utter disconnect and lack of recognition. An awakening, realizing that there was a dismissal of all the clues. It is dissociation reflecting an understanding of the sickness surrounding me; the intentional deception of everyone I ever loved, all those consequences put on my shoulders through the willful ignorance of all those who violated me. It is the pain of some of the people I love the most telling me I am weak, I am an anomaly, when in fact I am stronger than any of them would have been in the wake of having their deeply ingrained core identity (an identity we take for granted even having, I might add) being shaken and pulled out from under them. Through all my understanding, empathy, and forgiveness, I still hurt. However, I am firm in my unwavering appreciation of the truth and desire to make everything better for everyone out there. I now have the freedom of being who I am and always was with pride and more clarity. To know why I am the way I am in every way, so much more fully. It is an incredible gift of fortune. Love is not enough to solve the world's problems; until we have dignity and respect and rights to go along with the love that we all strive to let shine through, we will continue to falter. There are so many simple every day reminders around every corner. Having to hide huge parts of my life and huge accomplishments and huge joys and huge let downs from some of the people I care about most is a mind trip. An ethnicity change, and a certain kind in particular, is a mind trip. Reliving every age, each stage, completing an analysis of identity is a mind trip. If you have never had to reexamine your face, your entire body, be grateful. If you have never had to relive childhood memories as if you were a fraud, or feel sick looking at old photos, be grateful. If you don't see unimaginable trauma and families ripped apart on a regular basis, be grateful. I am so grateful, much as I suffer. Thank you all, those of you know who you are, so so so much, from my heart. Now that I am grounded, with all my roots exposed, I have a difficult but amazing life to go live. I made it one year, time to step forward for more of the rough terrain."

Sunday, July 08, 2018

Positive Experiences for DC People


I recently came across a post on Facebook in a donor conception group that was written by a parent who was asking DC people for input because they wanted their child to have a positive experience from being donor conceived. She also mentioned that she used an open ID donor, so that issue would not be rearing its head.
I found the question problematic because it makes the assumption that given a certain set of circumstances that a DC person would have to view their conception in a positive light. Therefore if a DC person had negative views about donor conception then there must be something inherently wrong with their upbringing.
I would argue counter to this point in so much that if a parent is trying to ensure that their child only views their conception in a positive light then this in effect is a form of brainwashing or at the least conditioning. Every DC person should be given the right to form their own opinion on their conception that is not biased by the views of their parents or society as a whole.
I know many DC people who had great upbringings and who view their conception and the processes surrounding it in a negative light and they should be allowed to express those views. Just as those who are happy with their conception, should be able to express those views too. It is far better in my opinion for a parent to support their child and subsequent adult with whatever stance they take on their conception and understand that it is perfectly natural for them to feel that way. They had no choice in the matter but the parent did. The parent should not be seeking post-hoc approval from their child.

Monday, December 04, 2017

South Australia Set to Give All Donor Conceived People Equal Rights to Information

The South Australian government handed down its response to the review of the A.R.T. Act and has given support to all donor conceived people in having access to identifying information on their biological father/mother (donor) regardless of when they were conceived and regardless of whether it was done under conditions of anonymity. This would mean that South Australia would be the second Australian state to do so.
http://www.abc.net.au/news/2017-11-30/identity-of-anonymous-sperm-donors-in-south-australia-could-soo/9208806

Thursday, August 17, 2017

Sperm donation perinatal outcomes in an Australian population cohort

This is a newly published study that I coauthored with some colleagues on perinatal outcomes after sperm donation.

Sperm donation perinatal outcomes in an Australian population cohort


Authors: Damian Adams, Renae Fernandez, Vivienne Moore, Kristyn Willson, Alice Rumbold, Sheryl de Lacey, Wendy Scheil, Michael Davies

Abstract
Aim
To compare perinatal outcomes for neonates conceived with donated sperm with those for neonates conceived spontaneously in an Australian population cohort.
Methods
Perinatal outcomes for all births in South Australia for the period January 1986–December 2002 were linked with assisted reproductive treatment records to determine those conceived from donated sperm. Birth outcome measures were analyzed using Student's t-test and logistic regression using generalized estimating equations to determine statistical significance.
Results
Donor sperm neonates were not significantly different from their spontaneously conceived counterparts in terms of mean birthweight, low birthweight, preterm delivery, small for gestational age, or large for gestational age. They were, however, significantly more likely to be born at lower mean gestational age (P = 0.012), and to have preterm delivery with low birthweight (P = 0.008), when controlling for maternal age, parity, ethnicity, socioeconomic quartile and baby's sex. These associations were not apparent when singletons and twins were considered separately.
Conclusion
There was some evidence of compromised perinatal outcomes for donor sperm neonates compared with their spontaneously conceived counterparts, which appeared to be partly attributable to multiplicity.

Wednesday, March 01, 2017

Diblings

Recently I came across the term diblings. Diblings was used as a term to describe siblings (half or otherwise) that would exist in other families as a result of donor conception. For example two families used the same sperm donor making the children technically half-siblings. So these would be termed donor conceived siblings or diblings.
So here we have an example of people creating a term to replace a perfectly good word that describes the situation accurately. Half-siblings are what they technically are. Some argue that the term “half” is rather demeaning and that they are just siblings. Either way those pre-existing terms describe the biological relationship between those people accurately.
So why create a new term? It is not cute. It even sounds like dribblings - as if they are dribbling. All it does is try to further devalue the significance of the relationship. If we were to acknowledge that they are indeed siblings or half-siblings then that might make people feel bad about them not growing up with or ever knowing each other.
It is analogous to how some people in the donor conception triad (recipient parents, donors, offspring) or even society itself, refuse to acknowledge that the donor is indeed the child’s father. Of course they are a father, they begot the child, which was the original meaning of the term. But because some were worried that the raising male parent might feel put off by this, they had to be called father too, and subsequently the definition of father changed over the years to reflect this change. By not acknowledging that the donor is indeed a father and the father of that child, it makes it easier to justify the separation and the lack of contact/interaction. Because if we did not know the circumstances of that child’s conception and someone informed you that the child grew up never knowing their father, of course you would think that that was tragic. But when we are informed the father was a sperm donor all of a sudden it becomes acceptable.
Sure the raising male parent acts as a father and does all those things a father should do (and no doubt in many instances does an amazing job), which meets one of the current definitions of father, but by another definition the donor is a father to that child as well. We need to stop trying to rebadge things to make ourselves feel better about our choices but acknowledge them for what they truly are.
A donor conceived person will love their parents for who they are, not what label has been attached to them. Nor should they have the relationship with their biological father devalued by stating that he is not their father. And so too by extrapolation a donor conceived person should not have their relationship status with their siblings or half-siblings trivialised to a dribble – oops I mean dibling.   

Tuesday, October 18, 2016

Some Research I Published Recently on Perinatal Outcomes from Gamete Donation

A meta-analysis of neonatal health outcomes from oocyte donation.
J Dev Orig Health Dis. 2015 Nov 27:1-16.
Adams DH, Clark RA, Davies MJ, de Lacey S.
Abstract
Donated oocytes are a treatment modality for female infertility which is also associated with increased risks of preeclampsia. Subsequently it is important to evaluate if there is concomitant increased risks for adverse neonatal events in donated oocyte neonates. A structured search of the literature using PubMed, EMBASE and Cochrane Reviews was performed to investigate the perinatal health outcomes of offspring conceived from donor oocytes compared with autologous oocytes. Meta-analysis was performed on comparable outcomes data. Twenty-eight studies were eligible and included in the review, and of these, 23 were included in a meta-analysis. Donor oocyte neonates are at increased risk of being born with low birth weight, very low birth weight, preterm, of lower gestational age, and preterm with low birth weight, when compared with autologous oocyte neonates. Conversely, low birth weight outcomes were improved in term donor oocyte neonates. These negative outcomes remained significant when controlling for multiple deliveries. The donor oocyte risk rates are higher than those found in general ART outcomes, are important considerations for the counselling of infertile patients and may also influence the long term health of the offspring.

https://www.cambridge.org/core/journals/journal-of-developmental-origins-of-health-and-disease/article/a-meta-analysis-of-neonatal-health-outcomes-from-oocyte-donation/42F0997B000AFA5D4C1FB564C32F4A78


A meta-analysis of sperm donation offspring health outcomes.
J Dev Orig Health Dis. 2016 Aug 30:1-12.
Adams DH, Clark RA, Davies MJ, de Lacey S.
Abstract

Although the use of donor sperm as a treatment modality for male infertility has become common place, the health outcomes for those conceived has been poorly studied. A structured search of the literature using PubMed, EMBASE and Cochrane Reviews was performed to investigate the health outcomes of offspring conceived from donor sperm. Eight studies were eligible and included in the review, and of these, three were included in a meta-analysis. Meta-analysis of clinical outcomes showed that donor sperm neonates are not at increased risk of being born of low birth weight, preterm or with increased incidences of birth defects, than spontaneously conceived neonates.

https://www.cambridge.org/core/journals/journal-of-developmental-origins-of-health-and-disease/article/a-meta-analysis-of-sperm-donation-offspring-health-outcomes/9D80FB804E60348888F5703B01F0F0CD

Tuesday, February 23, 2016

Victoria creates new legislation that gives ALL donor conceived people the right to their heritage

From:
http://www.premier.vic.gov.au/new-law-gives-all-donor-conceived-victorians-the-right-to-know-their-heritage/

All donor-conceived Victorians will now be able to access available identifying information about their donors and heritage from 1 March 2017 without donor consent.
The Assisted Reproductive Treatment Act Amendment Bill 2015 tonight successfully passed through the Victorian Legislative Council without amendment.
Previously, only people born from sperm or eggs donated after 1998 could automatically find out available identifying information about their donors when they reach adulthood.
Changes to the law in 2015 meant donor-conceived people born before 1998 could access this information, but only with donor consent.
The new law addresses this inequality and recognises that it is important for all donor-conceived Victorians to access information about their heritage, no matter when their donors donated.
From 1 March 2017, the Andrews Labor Government’s amendments will mean that people born before 1998 will be able to access the same identifying information without the need for the donor’s consent.
Knowledge about one’s heritage can contribute to a person’s sense of identity and is critical for medical treatments and family planning.
The Victorian Assisted Reproductive Treatment Authority will manage access to information about donors and provide counselling and support for donors, donor-conceived people and their families.
The new laws establish contact preferences for donors who donated pre-1998 to manage contact or choose no contact, with their donor-conceived offspring. This recognises that these donors donated on the expectation that they could remain anonymous.
Donor-conceived people will also be able to lodge contact preferences where their donors seek identifying information about them.
Quotes attributable to Minister for Health Jill Hennessy
“We believe all donor-conceived people should have the right to know about their genetic heritage, no matter when their donors donated.”
“This information can make a huge difference to the lives of donor-conceived Victorians. If this information is available, it shouldn’t be kept from them.”
“I wish to acknowledge the work of the Parliament in passing this important piece of legislation.”

Wednesday, December 02, 2015

Answers to some FAQs About Proposed Changes to Laws in Victoria

The following is reposted from the Are You Donor Conceived website, in which responses were written to some commonly asked questions regarding proposed amendments to the Assisted Reproductive Treatment Act. These are not my words I am just reposting here for others who may be interested in changes that occurring around the world and some of the arguments that are being used to try and create change.

http://www.areyoudonorconceived.org/frequently-asked-questions/

1. Donors were promised anonymity, isn’t it wrong to renege on that promise?
Early donor insemination practices were conducted in secrecy and varied according to clinic and jurisdiction. Some donors were given assurances that they would be anonymous, that they could not seek the identity of the recipient or any resulting child and signed consent forms with that undertaking. Others were told nothing and there is no documentation. Anonymity was a condition of donating as opposed to something that was necessarily actively sought. As times have progressed and donor-conceived people have grown, the effects of anonymity have become known. Many donors wonder about the children that they helped to create, children wonder about their donors, recipient parents seek information too. The removal of anonymity therefore is not about reneging on a promise, but rather showing that our understanding of what is important has grown and changed, and supporting openness and honesty for all parties.

2. But a contract is a contract right?
While ‘consent forms’ were signed by donors and recipient parents in which they agreed not to seek out the children or each other, the consent forms do not equate to legal contracts. In addition, such consent forms did not prevent children from seeking information, and could not bind them from doing so. In the instances in which donors were given assurances, either explicit or implied, any agreement that can be found to exist relates only to the donor, the provider clinic and the recipient undergoing treatment. There is also the issue of whether clinics or medical practitioners had any authority to promise or impose anonymity when from very early on there had been recognition that donor-conceived children would grow and might seek information. Any alleged ‘contract’ – if one could be found to exist-might therefore be declared void on grounds of public policy.

3. Doesn’t changing the law retrospectively create uncertainty?
No. The changes to the law would simply provide for a system that supports information release in a clear and explicit way. In the early days of donor-conception practice there was no law in Victoria providing that donors may be anonymous nor remain anonymous in perpetuity. In fact the 1983 Waller committee review of assisted reproductive treatment practices recommended that donors be advised that there can be no guarantee of permanent complete anonymity. Consequently when and where legislation has been introduced it has ended the practice of anonymous donations and enshrined the best interests of the donor conceived person as a guiding principle, providing them with the ability to access the identity of the donor once they reach maturity. A donors right to privacy (as distinct from anonymity) will be protected by a number of provisions, including statements of contact preference and mandatory counselling. The laws will therefore provide certainty for all, recognising the need for information, but balancing that with the ability to clearly state whether or not contact is wanted, and if so, the extent to which that might occur.

5. But this will be an invasion of a donor’s privacy?
The release of information about donors is seen as integral to providing donor conceived people certainty regarding their identity and biological parentage. A donor’s privacy will be protected by allowing him or her to place a contact preference stating the extent to which they would be willing to have contact with the donor-conceived person, if at all. Significant penalties will apply if that preference is breached.
In comparison, unexpected (and sometimes unwelcome) direct contact between immediate family members who may have been previously unaware of each other occurs daily in our community. These interactions take place without any legislated mediation and privacy protections, despite the fact that such contact could be embarrassing, personally disruptive and even result in court proceedings for estate claims or child support.
The second reading speech by Victorian Health Minister Jill Hennessy when introducing the bill to parliament contains a brief discussion of this issue and can be accessed here: http://www.parliament.vic.gov.au/

6. What about claims on a donor’s estate or child support?
Laws which provide for the legal status of children (including donor conceived people) stipulate that donors have no rights or responsibilities in relation to the child. The person undergoing treatment with donor gametes and their partner (if applicable) are deemed to be the legal parent(s) of any child conceived as a result.
Note, the vast majority of donor conceived people who will be affected by the Victorian government’s proposed amendments are all well into adulthood, their motivations for seeking the identity of their biological parent stem from thoughtful and sensitive consideration of questions relating to their own identity and family heritage.

7. Shouldn’t donors be consulted about these changes?
They have been over a period of many years.
Most recently, in Victoria, on the 23 June 2010, the Victorian Parliamentary Law Reform Committee received the first terms of reference to conduct a public inquiry into access by donor-conceived people to information about donors. This committee tabled an interim report in September 2010. The inquiry was continued by the subsequent parliament and the final report was tabled on the 28th March 2012.
The parliamentary inquiry was well advertised and thorough. It received many submissions from stakeholders and organisations and was extensively publicised in the media. Following the final report the government requested that a special independent donor consultation be held to canvas the views of donors. This report was conducted by Monash University, School of Public Health and Preventative Medicine, Jean Hailes Research Unit and was given to the government in May 2013. It represented the views of 42 donors three quarters of whom were not opposed to the release of their identity even though they may have been promised anonymity.

8. Why is advertising the voluntary registers not sufficient?
The voluntary registers operate to facilitate information exchange and contact between donors, donor conceived people and other family members. They are advertised and should continue to be. They are an important service and (as the name suggests) operate by matching details entered voluntarily on the register. Currently there are 221 donors listed and 110 offspring.
Opponents of the proposed legislative amendments suggest that their preference would be to better advertise these registers. There are a number of issues with this proposal, fundamentally that it perpetuates the stigma of secrecy and shame, which is demeaning and damaging for donor conceived people and it does very little to change their position at the present time.
Capturing all of the anonymous donor cohort would require a broad spectrum, expensive advertising campaign. Even if you were able to make all of those donors aware of the voluntary registers existence, that awareness would not equate to a comparative level of active engagement with the registers. Perhaps because of an outright refusal of donors to make themselves known but more likely because an application requires thought and can be an emotional process and therefore is something that they might intend to do “one day”.
Practically this means that the donor conceived person relies on their donor not only seeing an advertisement but then acting on that information in a timely manner. The number of donor conceived people (and donors) who might benefit from this approach would be much less than those who will be empowered and assisted by the legislative amendments.

9. Are there any other reasons that support such legislation?
With the advent of DNA testing people are now able to discover the identity of genetic relatives due to extensive genealogical databases originally created by people researching their family history.
The legislation in fact would provide for protections of privacy in terms of ensuring only contact that is wanted in the case of donors and donor-conceived people may proceed, as a result of them being able to place ‘contact preferences’. At present, without such legislation, unexpected contact may occur, and people may not be supported via counselling services.

In addition, the Assisted Reproductive Treatment Amendment Bill represents a paradigm shift for donor conceived people. It recognises them as mature adults who should have the ability to access vital personal information concerning their own identity, family and medical history. It also recognises that donors are real people with names rather than shadowy coded figures, who are important and worth knowing, but provides them with essential protections if sought.

Monday, November 09, 2015

Where's the Beef?

It has come to my attention that there are some people who are under the assumption through some of the things I have written that I am against parents. Assumptions rarely provide good outcomes for intellectual discourse. Now I will assume that the people that wrote those comments didn’t actually mean I was against all parents otherwise I would of course be against myself (example of how an assumption can be absurd), so I will have to presume that they are referring to recipient parents of donor conception as that is the topic of debate that I have engaged in.
So let’s see, we have my parents; my biological mother and my non-biological father (my dad). Both amazing people that I love dearly. They were pioneers and told me of my origins in the 70s when all parents were being informed by the clinics to keep it a secret. No problem with them. In fact I have great admiration for them in not only raising me but also for the truthful and loving stance they took.
I know numerous other recipient parents. Some of which are very dear friends of mine. Additionally some of these people have been instrumental in creating not only public awareness of donor conception but have contributed enormously to creating meaningful change, not only here in Australia but also internationally. My hat goes off to these amazing people. No problem here either.
But maybe I have a problem with donors. I know lots of them too. Some of which are also phenomenal people that I am privileged to call friend. If these guys happened to be my father I would be honoured. No problem there either.
So without a clear problem with parents per se, then perhaps I need to set the record straight. There are good and bad parents whether it is through natural conceptions or through donor conceptions. Just because a child was wanted and the parents went through immense emotional trauma and financial hardship to have these children does not mean that it will always be a good outcome. This has been an assumption that far too many hold as dogma. I have heard far too many stories from other donor conceived who grew up in abusive households or who had narcissistic or troubled parents to know that this is not the case. But yes there are good outcomes too.
Indeed infertility can be a truly terrible thing to deal with, something that can be incredibly unfair, and one which we should all empathise with. However, we need to move away from the notion that having children is a right. There is no legislation or international convention that specifies adults have a right to a child. Rather it is what is termed a “freedom”. The freedom to procreate. This freedom has been removed cruelly from some people by Mother Nature.
My beef is with the system and also those that think anonymity is a good thing. Yes that can include some parents. It is against the thought that deception is a healthy foundation to raise a family. It is against the concept that children and gametes can be reduced to commodities that are available for those that can afford it. It is against the hypocrisy that one genetic link is valuable but the other disposable. It is against those that remove the child’s ability to know their next of kin, their heritage, and their family health history.
A quote from the famous ethicist Immanuel Kant that is from his categorical imperative, applies to donor conception
“Act in such a way that you treat humanity, whether in your own person or in the person of any other, never merely as a means to an end, but always at the same time as an end.”
In this context the donor conceived should not be treated as a means to an end. The end being the creation of a child for the family. Rather that they will grow up to be adults too with the same needs and emotions as others including yourself. If it is important for you to have a child that is genetically related to either you or the other person in the couple, then the other genetic relation (with the “donor” and other related kin) can be equally important to the donor conceived person if they see it that way.

Monday, September 14, 2015

Biological v Sociological

Many people mistakenly believe that I only support biological ties. This is not true. Both biological and sociological ties in families are important. What I am opposed to is the trivialisation of the biological connection and the over-emphasis by various people and groups that these biological connections do not matter and that love is all you need.
Firstly on the sociological aspect. I was raised by two different non-biologically related men in conjunction with my biological mother. My dad who raised me till I was 10 and a step-father who raised me there-after. I was indeed raised in a loving home and both these men were exceptional and I love them dearly. Could they have raised me better than my biological father, absolutely, that is a distinct possibility. Does that mean that it was perfect? It would seem not, otherwise myself and many others would not be advocating for change in the way donor conception is practiced.
But here is the hypocrisy. Donor conception exists because typically one parent wishes to have a biological connection with the child, rather than adopt or foster other children. Yet the other biological connection is deemed disposable. This is clear hypocrisy. You cannot decide on behalf of the child which biological connection will be important to them and which one should be erased. That is unethical.
In the wider society, if biological connection weren’t important then we wouldn’t have genealogy and we wouldn’t have popular TV shows like “Who do you think you are?” We wouldn’t have millions upon millions of people on sites such as Ancestry.com or FamilyTreeDNA and 23andMe (the latter two both DNA genealogy testing companies). In Australia we wouldn’t have had national apologies to the Stolen Generation, Forced Adoptees and the Child Migrants, all of whom were separated from their kin. Doctors would not ask you what your family health history was. Ethnicity and culture would not be important to people. But these are indeed clearly important to people and society as a whole, just it is not allowed to be important to donor conceived people.
If biology was not important then every time a woman gives birth in hospital then they should not go home with the baby that she delivered but any baby from the nursery will do so long as they are healthy. After all biology doesn’t matter right and love is all that matters? They will love that child and that child will love them. So not a problem then? Yet you will not find one person who believes that this scenario is ethical or moral. It would very much be a massive problem and hence the hypocrisy. There are far too many people that are too fluid in their emotions and beliefs in when biology matters and just flip-flop on their stance.

In essence both biology and sociology do matter. But if you are going to have an opinion that is biased toward one side or the other then just don’t have a large dose of hypocrisy apparent in your opinions.

Monday, June 29, 2015

National Donor Conceived Persons Conference

A National Donor Conceived Persons Conference was held last weekend on the 27th June, 2015, in Melbourne, Australia.
In attendance was 49 adult donor conceived people from around Australia. This also included 3 DCP who flew across from New Zealand for the event. Additionally some Australian's flew back from Norway, USA, and Timor, making it a somewhat international event.
Several of these donor conceived people had never met another DC person before.
It was an emotional event with the sharing of stories and experiences, as well as the beautiful presentation of artwork and music relating to donor conception.
We had presentations on the use of DNA database testing, perspectives from donors, the state of the law in Australia, parallels between adoption and donor conception, as well as presentations by a Judge on children's rights, and by politicians on the changing face of the legislation in Victoria which will now give donor conceived people access to information on their biological father/mother (gamete donor) to bring it in line with what happens in adoption.
A thoroughly rewarding and eventful day, with many new friendships formed and old ones continuing.

Thursday, January 29, 2015

German Federal Court Reaffirms Donor Conceived's Right to Know

http://donoroffspring.eu/germany-federal-court-of-justice-confirms-donor-offspringss-right-to-know-their-donor/

Sunday, October 19, 2014

Petition to end anonymous donations in the U.S.

http://www.change.org/p/american-society-for-reproductive-medicine-end-anonymous-sperm-egg-donation-in-the-u-s

Thursday, September 04, 2014

I am attempting to change my birth certificate

What I am trying to do is have my dad’s name removed and replaced with “unknown”.
I am donor conceived. Sperm donors in the 70’s were anonymous and one of the only things I know about my biological father is the donor code RE.
I do not need a piece of paper to tell me how much my dad meant to me and how much I love him and will always love him (he passed away when I was 10 – 30 years ago this month).
What I do need is an accurate and factual record of my conception and birth. Apart from originally being instigated for taxation purposes, they are supposed to be a factual record of genealogy. Mine does not, nor does the majority of other donor conceived people’s birth certificates. By enshrining deception in the law and allowing this to occur the state government is complicit in enabling recipient parents to actively deceive their child about their origins. Something we know from research that the truth is often found out later in life with devastating consequences.
My dog has a more accurate birth certificate than I do, as do a lot of livestock. How is it that animals can have a more accurate birth record than a person? Now that is dehumanising and wrong.
A birth certificate is not a certificate of ownership, we do not own children. We merely love and nurture them to adulthood.
Now I was lucky and blessed that both dad and mum always told me the truth about my conception. Something that was extremely rare in the seventies as the doctors told them to keep it a secret from me. Modern research shows that my parents were correct and made the right decision for which I am forever grateful. They both taught me to stand up for what I believe in, and this is what I am doing. I strongly believe that I am continuing on my dad’s legacy of seeking and telling the truth by making this stand. His legacy also still lives on in my name, Damian HEDLEY ADAMS. This will not change.
As it currently stands if any of my descendants do genealogy research of my family they will be lead down the wrong path. Yes they will still be linked to the Adams’s and this is still important, but it is not their flesh and blood.
Birth certificates need to be reviewed. They should contain all of the biological parents as well as any legal parents (if different), that way parents will stop deceiving their children and the truth about their kinship will be available to them.
As far as I am aware this is the first time this has been attempted in Australia, and I may not be successful, but it is time to make a stand not just for me but for my descendants and other donor conceived people.

http://www.abc.net.au/news/2014-09-04/man-from-anonymous-donor-wants-birth-certificate-changed/5720126

Sunday, June 15, 2014

Types of Donation

Through conversations with others there seems to be misunderstanding and misuse of various terms in donor conception. For this post I am going to discuss differing types of donation.
Anonymous – this is where the offspring will never be able to gain access to identifying information on the donor (and vice-versa). Historically this is the most common form however the use of the following forms is increasing.
Identifiable – this is where the offspring will be able to access identifying information on the donor usually after reaching a specific age (ie 18 years).
Known – this is where the identity of the donor is known to the recipient parents at the time of donation. This is sometimes done through friends, acquaintances or even private arrangements.

Some people have been using anonymous to describe the second situation because they feel that during those 18 years the offspring will not be able to access this information. However, this is incorrect, particularly in places like Australia where regulation specifies that current donors must be identifiable. So while they child may not initially not be allowed access to identifying information they will certainly be allowed to do so at some stage, making the use of the term anonymous problematic. Its use in this way also provides confusion to the wider community. In academic literature in reference to the practice in Australia, we typically refer to the anonymous periods and identifiable or willing to be known periods. So for those Aussie donors who are currently donating, STOP using the term anonymous. No anonymous donations have been allowed in Australian fertility clinics since the introduction of National Health and Medical Research Council Guidelines from 2004 that came into effect in 2005.

Friday, March 28, 2014

DNA Testing Company 23andMe has a Blog Post on Donor Conception

23andMe has posted a story/article about donor conceived people using the services of their company to track down genetic relatives:
http://blog.23andme.com/ancestry/lost-girls/?utm_source=cj&utm_medium=cpa&utm_campaign=affiliate&utm_content=23c_Affiliates&utm_term=7354662&cvosrc=affiliate.cj.7354662

Friday, December 13, 2013

New Registry (FREE)

Unlike several others that cost to join the follow group is a new registry and online group that is free to join:
http://donorchildren.com/

Friday, September 13, 2013

It's a Small World - Especially with DNA Testing

From my Y-DNA test that I did with FamilyTreeDNA I only have 11 matches at the 12 marker range and that includes 2 that are at the 1 step range (that is one marker that is different by a one step mutation). This is from a database that is almost half a million men (500,000) that have tested with FTDNA.
This number of matches is not surprising even though there are many others who will have a much larger number of matches.
The surprising part is that one of my matches, is another donor conceived man in the USA (I live in Australia).
A man that I have had communications with for several years.
While we are very distant genetic cousins, we do share a common ancestor that is likely to have occurred about 100 generations ago or about 2000 years. (If a faster mutation rate is used in the calculations this could be reduced to about 50 generations or about 1000 years, but the slower mutation rate is more conservative).
So while we share a commonality in both being donor conceived we also share a common ancestor, and while we all share one if we go far enough back in time, it is quite ironic that some of us also share significant familial links beyond just being donor conceived.
Such a link might be meaningless to many people but for those of us that have no knowledge of our paternal heritage such information is interesting nonetheless.
The power of DNA genealogy makes the world a somewhat smaller place.

Monday, September 09, 2013

On Being Wanted

This is something I wrote elsewhere but thought I'd share it here: 
Before I start on that I will preface the following with saying that in the outcomes for donor conceived people there is a whole rainbow of emotions with some being completely happy and others who are traumatised and everywhere else in between. All views are equally valid but we also have to remember that this is a lifetime journey where views can change dramatically during that time (they certainly have for me). For others they will not change at all. Also note that I often use the term "some" because not all are of the same perspective.

Ok now on to being "wanted". I have heard this phrase used more times than I can count as well as the matching statement that other children are born into other scenarios which some people view as worse. What these statements do to "some" offspring is they impose what is termed in the literature as existential debt. This is where the child is aware of the efforts and costs that their parents went through in obtaining them. Because of this, "if" they do have any negative feelings they may be afraid of voicing these in fear of hurting their parents feelings. This is termed disenfranchised grief whereby the donor conceived person feels unable to express or process their grief.

We as a society recognise the tragedy when a child is born into a situation whereby the father may have run off (dead beat dad) or the tragedy of when the birth parents for whatever reason are unable to care for the child and have had to give that child up for adoption. Yet we are still having difficulty acknowledging the loss for donor conceived people simply because the kinship separation was planned and that the child was wanted in this manner.

Just as in any family the outcomes for any child will be varied depending on a plethora of circumstances one of which is NOT being wanted. Just as evidence of bad outcomes can occur from unplanned parenthood, so too can evidence of good outcomes. Conversely the same can be argued for when parenthood was planned and the child wanted, there can be bad and good outcomes.

This post is not meant to offend anyone in any way but rather as a means of presenting another perspective that some people may not have thought about before. I do not imply that every DC person will feel this way, far from it, but many that I have had discussions with over a great many years do have difficulty dealing with the use of the term "wanted" (others also feel extremely happy about being wanted). Additionally just as some parents and donors can be upset about terminology and various posts, so too can the donor conceived.

Monday, July 15, 2013

The Fallacy of Donors Wanting to be Anonymous

This is a guest post from a former donor, Ian Smith, who wishes to dispell the myth that all donors who donated under conditions of anonymity wish to remain so. Clinics and Doctors are wrongfully speaking on these peoples behalf disseminating misinformation through the public media. Ian wants to set the record straight:

Sperm donors – emerging from the shadows

 
The voice of the sperm donor is often the one less heard in debates on donor conception.   In relation to the issue of anonymity and possible removal of that anonymity the donor's views are often the subject of conjecture, assumption and assertion.  But are those assumptions right?   For the most part I think not. 

Members of the medical profession and others are often quick to assert the importance of the anonymity which donors were (apparently) promised in the 1970’s and 80s when there was significant expansion of donor conception practices in Australia.   Typical examples of such assertions can be seen here http://www.theage.com.au/comment/allow-sperm-donors-the-right-to-maintain-their-past-anonymity-20130507-2j5o4.html  and here http://www.theage.com.au/opinion/society-and-culture/why-the-promise-to-sperm-donors-must-be-honoured-20120410-1wmus.html

Recently and increasingly sperm donors are speaking up for themselves – and for the most part they reject the notion that they wish to hide behind veils of anonymity.  I am a member of that group of former donors who are speaking up.   See for example this piece http://www.theage.com.au/victoria/father-figures-20111112-1ncxt.html  which in turn encouraged other former donors to make contact with me.   Peter Liston is one such – a piece featuring an interview with him here http://www.theage.com.au/victoria/sperm-donor-steps-up-for-offspring-who-want-to-know-20121208-2b2ej.html and a piece on which Peter and I collaborated here http://www.heraldsun.com.au/news/opinion/allow-our-donor-children-to-know-their-heritage/story-fni0ffsx-1226679227163
 
From these connections with former donors a group has evolved – the Melbourne Anonymous Donors (MADMen).   Using that group as the base I recently undertook a small research study exploring the views of sperm donors.  That has now been published in a special – donor conception focused - edition of the Australian Journal of Adoption http://www.nla.gov.au/openpublish/index.php/aja/issue/current.
 
I interviewed seven former donors from the 1970s and 80s.  Key issues explored included:
  • Motivations for being a donor
  • Did donors give informed consent?
  • Their thoughts of the children born
  • The issue of anonymity – was it promised or imposed?
  • Contact – actual or potential
  • What name to use for sperm donors?
  • Attitudes to proposed changes to Victorian legislation to remove anonymity for pre-1988 donors.
  • Reflections and observations on being a sperm donor – with the benefit of hindsight, would they do it again?
 While the sample in this study is small, it nonetheless opens a window to an area that has until now been largely shrouded in mystery and thus open to the kind of assertions by and from the medical fraternity which are noted at the beginning of this post.  The interviews demonstrate that – at least for this group – the children fathered are far from forgotten.   Rather these men think actively of them and hope to meet and know their offspring (and in some cases have achieved that.  Far from being a fearful of the removal of anonymity the past sperm donors whose views are reported here will welcome and embrace such change. 
 
The full article:   Sperm donors – moving out of the shadows. Contact and connection between former sperm donors and their offspring - experiences and perspectives” is worth a read.   You can find it here: http://www.nla.gov.au/openpublish/index.php/aja/article/view/3061/3607
 
I welcome comment and questions on this topic:  iwsmith@netspace.net.au
 
Ian.

Saturday, July 06, 2013

Genetic Genealogy Trumps Anonymity

Here is the abstract to a paper I just wrote and published on this subject. The link below will take you to the full article, just click on the full text pdf link on the Australian Journal of Adoption website (it is open access (free)).
Building a Family Tree: Donor-Conveived People, DNA Tracing and Donor 'Anonymity'
Damian Adams, Sonia Allan
Abstract
Genealogical tracing of ancestors has existed across cultures and throughout history for thousands of years. Today it is a popular pastime for many, with motivations ranging from a desire to place themselves and their family within a larger historical picture, to preserving the past for future generations, to having a sense of self-satisfaction in accurate storytelling. It may also serve to assist people in framing their identify and building a picture of themselves. It may create a sense of connectedness and kinship. This is so for donor-conceived people, as it is with many others that search for information about their family history and heritage.

This paper considers the obstacles to searching that donor-conceived people face. In particular, the secrecy that has surrounded donor conception has meant that many do not have access to the records that would identify their donor(s) or siblings. It examines the use of DNA testing, to assist. It is shown that, while proving a useful tool for some, such testing may not be enough for others. That donor-conceived people are denied access to records that would provide them with the information they seek is questioned. The authors therefore support laws that would provide access to records. Options of enabling contact vetoes or contact preferences are explored, as a way to ensure that people are comfortable that privacy and confidentiality will be protected.

Tuesday, July 02, 2013

New BBC Documentary on DC



I have no connection with this production. The producers have asked me to circulate information regarding their request to speak to people. Please contact them directly if you are interested:

Award-winning British filmmaker Sue Bourne has recently been commissioned by BBC2 to make a major new documentary about the Danish sperm industry and is looking for people to assist her with her research. 

What is intriguing is the fact that this small country has become the major player in the sperm bank business internationally. Why has this happened, and what are the possible consequences? This film will follow the compelling human stories at the heart of the international sperm trade, to increase public understanding of this complex, fascinating and often-misunderstood issue.

We are very keen to talk to all the people who are involved in each stage of the sperm bank business – the clientele coming to Denmark or having the sperm shipped to where they live; the donors, the staff, the clinics and of course the donor conceived children as well.

In particular we would love to speak to families and individuals who were created using a Danish sperm donor. We would like to understand more about what it’s like growing up as a DC child? What are your thoughts and feeling around the anonymity debate? Have you ever felt the need to track down your donor? What advice would you give to individuals and couples who are considering donor insemination today? Whatever your point of view, we would love to hear from you.

At this stage we are just having informal phone conversations with people. These chats can be completely confidential and there is no obligation to take part in the final film. It would just be great if you could help us increase our understanding of all the different issues involved.  

If you might be interested in having an initial phone conversation with Sue’s team, please do get in touch with Sarah Harris (Assistant Producer) at Wellpark Productions on 020 8932 0133 / 07958710362 or sarahhar@gmail.com

Sunday, May 12, 2013

Past Donor Assumptions



Currently in Australia there is quite a vocal backlash from the fertility clinics about the possibility of introducing retrospective access for donor conceived people to identifying information on the gamete donors (their biological fathers and mothers). Typically there will be claims that it would be erroneous and a serious breach of trust and perhaps even contract to introduce retrospectivity onto donors who were originally promised anonymity. Whether or not you agree with retrospectivity is not something I wish to debate in this post but rather the assumptions that the clinics are using for their argument.
It is an assumption that all donors who donated under anonymity conditions wish to remain anonymous. Sure some will do but others won’t. A serious problem here is that the donors had NO option when they donated. They were not given the option of ticking a box that said anonymous or willing to be known. Anonymity was mandatory and after speaking to several donors who did donate at the time, quite a few of those have said that they would have been willing to be identifiable if they were given that option. But they simply were not allowed to do so. Currently they are still not being given the freedom to choose as they are not being asked at an individual level whether they wish to remain anonymous or become identifiable.
They also assume that donors do not change their minds over time. Research by renowned donor conception researcher Daniels et al show that many past donors do in fact address their thoughts and emotion in regard to their donation over the course of their lifetimes. Some of them do in fact become more open to the exchange of information when they originally wanted anonymity (certainly not all, but some do).
Additionally they assume that past anonymous donors do not want contact with their offspring. The longest running voluntary register in Australia (Victoria) has more donors on its lists than it does donor offspring. Which I think speaks volumes in itself. This shows that the proportion of past anonymous donors that wish to remain anonymous is not as large as the clinics would lead us to believe.
We are being constantly bombarded by clinics speaking on behalf of donors when they in fact have not canvased the views of those donors. They are making claims based on assumptions without actually speaking to the people they are advocating on the behalf of. Which pretty much is a fail of Advocacy101.
Now what is that phrase about the word ASSUME again? (rhetorical question)