Let's retrospectively release information to Australia's donor-conceived

from Bionews:
http://www.bionews.org.uk/page_104517.asp
05 September 2011
By Dr Sonia Allan
PhD(Law), LLB(Hons), BA(Psych)(Hons) Grad Dip LP, GCHE, Senior Lecturer Law, Deakin University; Global Health Law Fellow, Georgetown University Law Center 2011; Churchill Fellow 2011
Appeared in BioNews 623
An Australian commercial television station recently ran a news story about a donor-conceived woman who has heritable bowel cancer (1). She did not inherit it from her mother. She is denied access to information about her sperm donor because he donated before laws in Victoria enabled information to be released to the donor-conceived. She cannot contact her eight half-siblings, who share that donor, to warn them they may be at risk.
This story reminds us that people conceived using donor gametes have good reasons for wanting information. In fact, it is crucial. It is a matter of identity, medical history, avoiding risks or fears of forming consanguineous relationships, and knowing your genealogical heritage. For others, it is about needing a name so they don't have to refer to their donor as 'donor' or by a clinic code.
In February 2011, an Australian Senate Legal and Constitutional Affairs Committee inquiry into donor conception and identification recommended national legislation be passed to allow access to information as 'a matter of priority'. The Committee also requested a national register be set up to allow information exchange (2). Such recommendations recognised the need for information and the lack of uniformity across the nation.
Several Australian states, including Victoria, Western Australia, New South Wales (NSW) and South Australia, already require donors to consent to the release of information before donating. But - as the law in each state was introduced at different times - donor-conceived individuals are treated differently depending on when and where gamete donation took place. Information about donors has been available in Victoria since 1988, subject to donor consent, and - since 1998 - consent prior to donating gametes has been compulsory.
Other jurisdictions are governed by other guidelines. These have, since 2004, meant clinics cannot use donated gametes unless the donor has consented to releasing identifying information to people conceived using their gametes (3).
The question in all jurisdictions remains whether to allow information to be released retrospectively. This is currently the subject of further inquiry in Victoria (4).
Unfortunately, some commentators object to releasing information retrospectively, arguing a donor's privacy should prevail. But in Australia a 'right' to privacy, while valued, is not absolute. In fact, there are many cases in law where a person's information can be released, including where genetic relatives are at imminent risk of disease.
Other commentators argue donors had a contract for anonymity. But a sample of consent forms signed in the 1970s and 1980s by donors and recipients in Australia reveal they did not prohibit a clinic from releasing information to donor-conceived people (5). They only prevented the release of information to the donor about the recipient parent and vice versa, and - in some cases - ensured the donor would not seek information about the child.
Finally, there is the argument that some donor-conceived people do not want information. But this is no reason to ignore the call from many donor-conceived people who do. The call is getting louder as they marry and have families. Their information remains on file while they are told they cannot have it and cannot pass it on to their children.
Another thing missing from all the opposing arguments is many donors want to exchange information, but do not have an avenue to do so. Parents of donor-conceived people are in similar distress. They want to be open and honest with their families, but are being denied.
I argue that the question we should be asking is - not if information should be released - but how?
Australia's adoption policy is a useful model for release of donor information. All states and territories in Australia passed retrospective legislation that allows adoptees to access information about their genetic heritage. The system protects people's privacy by allowing them to bar contact, whilst allowing for information to be released.
The NSW Law Reform Commission in the 1990s concluded that passing retrospective laws allowed the competing interests of different groups to be balanced. They wrote: '[T]he view that prevailed was that the law should enable adopted persons and birth parents to have the right to information, even though this did mean a change from the position as it was when the adoption order was made. The interests of those who felt threatened by the new law were acknowledged by a contact veto system' (6).
'Information vetoes' were also once possible, but now only remain in South Australia. Interestingly, Queensland enacted retrospective legislation in 2010 that removed 'information vetoes' to redress the injustice suffered by more than 3,000 Queenslanders adopted before 1991. There are an estimated 60,000 donor-conceived people in Australia.
The manifest injustice suffered by donor-conceived people, donors and recipients who need information outweighs arguments that some donors wish to remain anonymous. It is not about making donors into parents - they carry no legal 'rights' or 'responsibilities' in law. Rather, it is about exchanging information.
Sensitivity, counselling, education and public awareness campaigns prior to legislation coming into force would help counter some of the objections. Contact vetoes could be placed to protect the privacy of donors who do not wish to form a relationship with the donor-conceived or their families (7).
While some may argue passing retrospective legislation creates 'potential for injustice, distrust and panic', this misunderstands how such legislation works. The Victorian Adoption Network for Information and Self Help (VANISH) says - despite initial anxiety about the retrospective release of adoption information - it is now well accepted that people wanting information about themselves is normal. The experiences of all involved have been, more often than not, positive.
Donor-conceived individuals deserve the same.

SOURCES & REFERENCES

1) See Donor Disclosure: http://www.youtube.com/watch?v=1mLdw3v1pkI

Ten News | 27 July 2011

2) Donor Conception Practices in Australia

Senate Legal and Constitutional Affairs Reference Committee | 2011

3) Ethical Guidelines on the Use of Assisted Reproductive in Clinical Practice and Research

National Health and Medical Research Council | 2007

4) Inquiry Into Access by Donor Conceived People to Information about the Donors

Victorian Law Reform Committee | 2011

5) Contracts kindly provided to author by donors, recipients and donor conceived individuals

|

6) Review of the Adoption Information Act 1990 Issues Paper 7 (1992), Chapter 3, [3.14]

New South Wales Law Reform Commission |

7) See Sonia Allan, 'Psycho-Social, Ethical and Legal Arguments For and Against the Retrospective Release of Information about Donors to Donor-Conceived Individuals in Australia'

19(2) Journal of Law and Medicine (Forthcoming) | 2011

An Open Letter to the ASRM from a Donor Conceived Adult

http://www.donorsiblingregistry.com/blog/?p=283

An Open Letter to the ASRM from a Donor Conceived Adult
Posted on July 1, 2011 by wendykr
An open letter to the ASRM from Susan Kane, a donor conceived person, in response to Todd Essing’s commentary (Balancing the Rights of Donor Offspring With Those of Donors: But What About Parents? Forbes. June 30/11, http://tinyurl.com/Essig-2011-06-30) which was a response to the commentary that Naomi Cahn and myself placed in BioNews last week (The Birth of Donor Offspring Rights in the USA?, http://tinyurl.com/6ce5kny).
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As a donor-conceived adult, I appreciate Todd Essing’s observation that “law is a blunt instrument” for managing the gap between technology and social norms governing its use. (Forbes, see above link)

And yet, law is exactly where we turn when people and industries fail to regulate themselves. And, despite Essing’s feeling that gamete donation — with us for over 100 years — is “new”, we have decades of evidence that the current norms and regulations governing gamete donation in the United States are failing everyone.

Following are three quotes from donor conceived adults from this week’s article published in Human Reproduction entitled: “Offspring searching for their sperm donors: how family type shapes the process”

“It makes me angry that I am denied the basic right of knowing who my father was and what ethnicity I am.”

“I am curious as to what my biological father is like, do I have any siblings, what were his parents like.”

“The man who raised me is still my dad, but I’m pissed off . . . I’m missing half of my genetic medical history.”

It’s curious to me that masturbating into a cup or donating eggs seems to Essing an entirely different thing than the more commonly known way of conceiving a baby but not raising it, namely, adoption.

Which part is so confusing? Is it the cup? The presence of doctors? The fact that this is an intentional act on all sides? Does the payment make it confusing? Is it all that pretty, shiny, technology?

Let me ask you for a favor. Stop looking at the cup. It doesn’t have the answers we need. Look me in the eye instead. As it turns out, I’m just like every other human. So, pull our your Psych 101 text and keep it handy while we chat. It applies to me too.

As anyone in the mental health field should know, decades and decades of adoption research has taught us that secrecy in families causes damage. It has taught us that learning that your parents are not your parents late in life wreaks havoc on your basic sense of trust. Most of all, adoption has taught us that genes matter.

They don’t matter more than love. I never said they did. But I challenge you to find an adoption professional in North America today who would tell you that genetics is irrelevant in family creation. Genes matter — today more than ever.

Genes matter to donor families. These families have specifically pursued infertility treatment rather than adoption. The fertility industry *exists* because genes matter. Allowing people to pass on their genetic material is what fertility treatment *does*. It amazes me that genes can matter to the families and doctors you serve and yet both you and Allison Rosen can’t believe that they also matter to *me*.

Who exactly gets to decide whether donor anonymity — being cut off from part of your genetic heritage — matters? Is it the parents of donor children? Is it the donors, kind people that they are? Doctors? Forbes’ columnists? Mental health professionals?

The answer, Mr. Essing, is that we do. We get to decide whether it matters to us. And the answer is: it does.

I’m sorry that your professional group chose not to learn anything from adoption research, but I’m here to tell you that the kids are all grown up. We’re not children under our parents’ care — we are teenagers, we are college students, we are the grown parents of our own children. We’ve thought about this system that you so carefully constructed and we’ve decided that it sucks. I’m sorry.

I know that you’re worried about the families and donors you counsel. I appreciate your concern. But I want you — the expert — to look ahead on their behalf, to help them think about the teenager, the college student, the parent. Your job is to advocate *not* for the family sitting before you, but for the family they are about to become — the one that includes a donor child, to whom genes matter.

And if the ASRM had done this, there would be no need for a law in Washington State — because donor anonymity would no longer exist. But you failed to advocate for us. You chose convenience over conscience. You chose the present tense over the lessons of history. And so we have stepped in to do your job — to advocate for the long-term mental health of donor families. We plan to create a new system that does not pit the needs of children against their parents or their donors. And there will, unfortunately, be conflict between us — until you start listening to everyone you are supposed to serve.

Listen, Mr. Essing. I’m not an angry teenager. I’m a 43 year old woman with two children of my own, also conceived by DI. And what I and other DC adults are telling you, and other members of the ASRM, is that you are *wrong*. You are totally, entirely, and dangerously wrong.

Your policies are wrong, your thinking is wrong, and most importantly, you are on the wrong side of history. I’m very sorry to be the bearer of bad news. Everyone did the best they could, but the system is terribly flawed and we all hate it. We’re telling you to change it now, before we sue.

There aren’t many “older” adults like me. We’re everywhere, of course, but you can’t organize a group of people who are dreaming. But there’s an entire *army* of DC adults coming of age, right now, as we speak. Do you really want to fight the very children you helped create — in court?

It’s your choice. Future generations of textbook writers will judge your actions. When social norms fall behind technology, we need to create them, not wring our hands and wonder what will happen. I’ll see you on the battlefield of history. May the best ideas, the best practices, the best path forward — win.

Susan Kane
Boston, MA
July 1, 2011

My Daddy's Name is Adoption - NOT!

In a recent Bionews article Vince Londini (a DC recipient parent) takes exception to the MDND report and one of the authors support of adoption but not donor conception.
http://www.bionews.org.uk/page_93262.asp
His argument being that he views DC and adoption, due to some of the consequences of such actions as being comparable and therefore that the MDND authors viewpoint does not hold water. It is my opinion that his perception of both processes is narrow minded and fails to take into account a vital element. I posted a comment on the Bionews article but unless you are a member of that site you will not be able to see the comment so I have reposted it here: 

Mr Londini puts together a fairly convincing argument........on the surface. The flaw in his analysis is to compare adoption to donor conception on equal terms, on a comparing apples to apples basis.


Certainly, in both situations the child is deprived of one or both genetic parents. Certainly both groups shared similar outcomes in mental health, substance abuse and delinquency in the MDND report. Certainly the two groups share similarities which is even acknowledged by groups such as the Evan B Donaldson Adoption Institute. However, the key and most important difference is intent.

Adoption is used as a last resort to ameliorate, but not solve, the tragedy of an existing child whose biological parents are unable for whatever reason to care for it. In this situation the people who have created the child never intentionally set out to create one that would have to be relinquished for adoption. It occurs either through accidental conception or circumstance. Donor conception on the other hand is a completely different kettle of fish. Even prior to the childs conception which is deliberately preplanned, the intent is to separate and deprive the child of one or both biological connections. It is not the result of happenstance or circumstance.

While some of the outcomes for the child may have similarities, the premise of the two sitautions are not comparale.

It is completely understandable that Mr Londini would take exception to the MDND report as a recipient of donor conception practices. To agree with the conclusions would potentially create emotional trauma for himself. For those parents who have since undertaken donor conception and have come to the realisation (whether right or wrong) that their decision may have harmed their child in any way, it becomes a difficult and lifelong journey of assimilating and processing that concept. This statement is not a defence of the MDND report or its recommendations, nor is it a defence of adoption practices, just a statement that acknowledges the emotional and philosophical complexities of those who have made the decision to undergo donor conception.