By admin on March 25, 2008

Over the past several months there have been a couple of Donor Sibling Registry “copycat” sites. These sites offer some of the same capabilities that the DSR has offered for years. Both sites initially swiped our entire clinic list which took 7 years and hundreds of members to assemble and one that I know of emailed DSR members without permission (lots of angry DSR members).

There are repercussions of creating these new small DSR types of sites. They dilute what has been a single focused searching capability. I hear all the time from adopted people who wish they they too only had one source to search at. The more “registries” the less likely people are to find one another. When pressed on this, these sites responded with messages like “the more the merrier.” These people haven’t a clue.

From Bill Cordray, one of the most outspoken donor conceived people in the US: “I think it is a bad idea to undermine the reputation of Wendy’s work by setting up a competitive registry. Although it’s a free Internet and you can do what you want, it will just weaken the value of DSR if several similar registries are set up and you’d have to go to all of them to do any cross-checking. As far as the fee goes, it is more than reasonable.”

Creating more “donor sibling registries” only does a dis-service to donor families around the world. If the focus is taken off of us, it makes it harder for people to know where to post themselves so that they have the best chances for being found. Ultimately, people will not have the chance to connect that they have now, through the DSR. These new sites boast that they are free. Well, it’s easy to be free while you have a few dozen members. We were also free for the first five years of operation. When we hit more than 7000 members, it became clear that I would need help from members to continue growing. We grew into much more than a yahoo group, or simple database. No one is denied membership for financial hardship, and site site is still free for browsing. The $40 membership fee is only for people wanting to post their information or make contact.

The sperm donation industry is having a meeting on March 28th of this month. In their announcement letter, the fact that there are “registries” gave them license to minimize what the DSR has accomplished: “These lay registries have emerged without public discourse, public accountability, multidisciplinary expertise, uniformity or oversight.” The more “registries” the more it takes away from the thousands of people we have helped and the important work that we have accomplished in educating, connecting and supporting donor families.


By admin on March 24, 2008

By: Bill Cordray, Donor Conceived, b. 1944

There was a recent comment that anonymity violates the U.S.
Constitution and then a couple of posts that asked for more
specifics. I’m going to attempt an answer here but I don’t expect it
to be totally persuasive to some but at least should give a good idea
why the removal of anonymity is important to the rights of the donor-
conceived. This is a controversial issue that threatens many people
here, especially those who would be unable to find a donor if
anonymity was eliminated. I don’t write this to make anyone feel bad
or guilty but in the hope that you will respect those of us who
deeply believe in our right to find our genealogical connections.
This belief does not mean we’re dissatisfied with our existence or
feel like our parents were inconsiderate. It must seem strange to
others that anyone could find negative things to say about something
so positive as the birth of a child and the joy that parents and
children will share together. All children experience joy plus pain
over things beyond their control. But DI children have a legitimate
right to criticize the circumstances that bring pain since there are
no reasons why the negative effects of secrecy and anonymity cannot
be controlled and eventually eliminated.

It also seems to some that our criticisms show ingratitude to people
who made our lives possible. To be fair to the doctors who began
this, they have seen themselves as miracle workers who are helping
people in pain. Their intentions are noble. For over a hundred years
they have operated on the plausible assumption that what they do
causes no harm and immense joy for parents. They had no reason to
suppose that this wouldn’t work if everyone cooperated. From the
reaction to one article in a 1909 medical journal, they knew that
this process was subject to intense public distaste. Infertility was
seen as a stigma as it still is today but far more prior to the last
couple of decades. Doctors also saw that infertile couples themselves
had to struggle with their consciences when presented with this
option. To make the process seem less objectionable, they developed
ways to look at donor insemination as purely a medical act. Under the
umbrella of doctor-patient privilege, they established a system and a
language that would protect everyone as much as possible. They wanted
to shield DI parents from public scorn. This however depended on
secrecy, anonymity, a purely medical focus, and the acceptance of
contracts that would guarantee that general knowledge of the system
would be limited and not become a matter for public discourse. This
kept the issue out of the public eye and safe from legislative
action.

At the same time, adoption practices were also characterized by
strict secrecy, from around the end of 1945 through the middle of
1970s. The rationale was virtually the same: protection of all the
parties from the stigma of infertility with the added element of the
stigma of unwed mothers. Then, a series of books written by adopted
people as well as several studies began to show that the decision to
rely on secrecy did great psychological damage to adopted people as
well as damage to adoptive parents. Narratives from birth mothers and
a few birth fathers also revealed the lifelong impact of losing one’s
child was more destructive than assumed. The system began to become
more open, with many nations establishing the rights of adopted
people to identify their original parents. The United States is still
behind the rest of the developed countries with respect to identity
rights but now the current trend is towards relinquishing parental
rights while allowing contacts with original families preserved to a
higher degree.

Unfortunately, donor insemination practitioners have not learned the
lessons that adoption professionals so painfully discovered. Despite
a wealth of data indicating that secrecy poisons family life in
adoption, the infertility profession has not been able to see the
analogy between the similar family dynamics. This is partly due to
the primary focus on infertility as a medical issue and the lack of
any dialogue with psychology and sociology professionals who would
have given critical feedback to doctors. This is also because there
is no legal process involving courts and legislation as there is in
adoption. Without outside regulation, the profession has given
itself sovereign powers without the consent of anyone representing
unborn children. Its policies exclude the wisdom to be gained from
experts in sociology, psychology, family law, and ethicists. The
profession has not learned from the experiences of older DI families,
donor conceived people and from the reflections of previous donors
about the impact on their lives as the result of their youthful
decisions.

As I said before, I do not mean to demonize the doctors who made
these policies at a time when very little was known about the effects
on DI children. Their intentions were good and based on empathy for
the pain of infertile people. If my criticisms sound negative I make
them in the spirit of the same empathy for infertile people, not in
spite or anger but in the hope of making something positive out of
all this for ourselves and other DI children.

Every day infertile people come to doctors for advice but they
continue to be poorly informed about the ramifications because their
only sources of insight are specialists. Most DI parents on DSR and
other infertility related web sites have the Internet and recent
media coverage to help them understand DI. Please consider that prior
to the Internet almost no one had any knowledge of the dynamics of
DI. Imagine yourself getting a diagnosis of infertility and getting
all your information about DI solely from the doctor and no one else.
That is how it was for my parents in 1944. It has also been the same
for hundreds of thousands of 20th century infertile couples. Until
the last fifteen years or so, there was no Internet, few books about
it anywhere, no infertility counselors and no local support groups of
other parents. My parents knew no other DI parents. In the doctor’s
office they saw an impressive diploma on his wall. This was a sign of
his expertise and wisdom. His credentials meant he must have superior
judgment and that his advice was based on experience and would
naturally be accurate. They accepted his authority to speak about
issues they could not yet comprehend or the future they could not
foretell. They allowed him to control the process. Without him they
wouldn’t have children, except through adoption. That had turned out
fine for their first son, mu older brother, but they had been deeply
hurt after losing two foster children whose wartime mothers reclaimed
them when their husbands came back from the war. In the doctor’s
office, DI seemed so much safer but they were headed into unknown
territory. They never questioned the degree of his expertise or
whether his statements had any basis in reality. They knew nothing
and had no access to contrary evidence. They may have asked the
doctor for names of other couples who were raising DI children and
could tell them what to expect. Of course, the doctor would not be
willing to risk violating another couple’s privacy. For all that my
parents knew, they could be among the first pioneers in this. The
risks were enormous but their medical advisor told them their fears
were groundless as long as they kept it secret. No one else needed to
know the truth, not even the child. They could not question if he had
a bias or a vested interest in my parents’ decision.

People on this site, especially after the recent Oprah program, may
not realize how much totally unaware the public has been about this
practice. When I learned, at age 37 in 1983, that I was conceived
through donor insemination, I was only vaguely aware of it, probably
going back to some publicity of the Repository for Germinal Choice in
the mid 1970s. I then did extensive research about it and was
surprised at how little was written about it, even though the first
DI was done back in 1884. Fertility experts almost exclusively wrote
the few books in the library or in bookstores at the time. But now
there are other voices that should be heard, not just those with a
vested interest in keeping the status quo but scholars who have no
personal involvement either way.

Wendy placed a paper called “A Case Against Sperm Donor Anonymity,”
by Tom Sylvester, a law student at Yale’ This essay makes most of the
points I would but I will add a few more below.

I’ve also been contacted recently by a New Zealand Adoption Reformer
name Keith Griffith. He has asked me for help in his upcoming
presentation at the “New Zealand Medical Law Conference. His paper is
called ” ART and the Right to Know your Genetic Origins- What we have
learnt from Adoption Reform and its application to ART, DI, etc.” He
is an attorney who has worked for 40 years in both the social and
legal aspects of adoption in New Zealand, Canada, USA and England.
His research on adoption led to the NZ Adult Adoption Information Act
1985 that opened up adoption records in NZ. His book “The Right to
Know Who You Are – The Reform of Adoption with Openness Integrity and
Honesty” was published back in 1992 and was highly influential. I’m
sorry to say I haven’t yet read this but I have read his rough draft
for his upcoming presentation. About the only thing I could add to it
are the results of my “Survey of the Attitudes of 105 DI Adults about
Secrecy, Anonymity, and Access to Information.” This is currently
under analysis by the Department of Psychology at the University of
California at Davis and will be available within a few months.

Both Tom and Keith have made excellent cases for the abolition of
anonymity and the right to know who you are. Beyond the fact that
many DI adults want to reform DI so that they can gain access to
their full identity, there are legal issues beyond our sense of
deprivation that ought to be discussed here among DI parents and
sperm donors.

We are often told we should accept the fact that clinics are not
obligated to release identifying information to us. The presumption
is that the contracts drawn up by clinics or doctors are legally
binding and guarantee a donor’s right to anonymity. In fact, such
contracts have been held by some courts as invalid, as cited by Tom
in the Johnson v. Superior Court case. The donor’s right to anonymity
is not codified anywhere and is simply an untested privilege invented
by the infertility industry. Although there is an assumption of a
right to the use of donor insemination, this does not mean that this
right has priority over children’s rights. These contracts are not
seen by individual state laws as a means to deny our access to
information. At best they ensure that there will be no interference
from the donor into the parental autonomy and familial privacy
interests while children are under the authority of their family’s
protection as minors. However, such interests disappear when a child
reaches adulthood and attains individual autonomy. There is nothing
in these contracts that would hold DI adults to the terms of
anonymity, particularly since they were not a party to the agreement.
If you will allow an analogy to adoption practice, such contracts
guaranteeing birth mother privacy have been judged null and void in
various adoption acts such as in Victoria, the United Kingdom, New
Zealand, several states in the US and other countries. The basic
tenet behind the Victorian Adoption Act is that all people are held
responsible to the children they create and cannot expect the right
to remain anonymous from the child she surrendered.

The constitutionality of DI contracts is definitely questionable.
This is the core of my belief in the case for abolition of anonymity.
If the contracts cannot meet the substantive due process clause of
the 14th amendment, then the terms are designed to protect the
identity of the man who fathers a DI child are not defensible and are
therefore could be ruled “unconstitutional.”

The history of Contract Law was formed through a long period of
Supreme Court decisions soon after the Civil War that established
sanctity for contracts as part of the Constitution. This Liberty of
Contract tenet was created primarily because the majority of S.C.
Justices for over four decades were former corporate lawyers whose
loyalty to big business in the form of laissez-faire economics
superceded their duty to protect the civil rights of public. These
Courts consistently struck down any state public interest in the
regulation of business.

As Chief Justice Hughes said, the constitution is what the Courts say
it is. It evolves. Former court decisions gave constitutional
authority to ideas that have since been repealed such as the Dred
Scott Decision that denied the citizenship of slaves, the prohibition
of alcohol, forced sterilization during the eugenics era, denied
accessibility to the disabled, and for the argument here, liberty of
contract.

The stock market crash in 1929 and the long years of the Great
Depression finally changed the public and judicial opinions about the
validity of laissez-faire economics. Liberty of contract was finally
struck down in 1937 and remains a discredited doctrine today,
replaced by other tenets like substantive due process, a preference
for judicial review over judicial restraint, and the right to privacy
(still vaguely defined).

The various clinic contracts could readily be challenged as violating
statutes in nearly every state, where communities set forth birth
certificates as truthful records of parentage. One other problem is
their coercive nature. They restrict the choices of donors and DI
recipients. Despite your agreement to sign away your and your
children’s rights in order to follow their rules for creating
children, the lack of informed consent is critical to their weakness.
Fairfax even attempts to intimidate DI parents to compel their
children and future grandchildren to refrain from any attempts to
identify their paternal lineage. This is clearly not within their
lawful power and is a violation of contract laws to restrict non-
signatories whose rights have been illegally constrained. Clinics and
sperm banks continue to act as if they have a liberty of contract
that usurps governmental authority, operating under the blanket of
patient privacy that does not extend beyond the medical assessment of
infertility to include quasi-therapeutic medical procedures. Donor
insemination does not require any medical training and is often
performed by the recipient herself, without a doctor. Without
statutes that require regulation of DI, the clinics presume the power
to make their own private laws, to execute their own private power,
and to be the sole judicial arbiter of who gets access to non-medical
records of paternity.

Parental interests in anonymity and the access to sperm pertains to
their status as legal mothers and fathers with parental rights and
interests valid only for eighteen years, during which time they
exercise familial autonomy over the child. But this expires when the
child reaches the self-autonomy of adulthood.
The individual’s interests in identity rights, for those conceived
through anonymous sperm, extends from the age of maturity for the
rest of their life.

The violation of substantive due process of the 14th Amendment makes
it possible that courts could rule the contracts unconstitutional.
The other question is whether anonymity is a constitutional violation
of an individual’s right to know who he is. This is not clear since
no U.S. law exists that establishes such a right in terms of social
and civil liberties. These liberties are a function of society to
grant or deny through the freedom of the democratic process. We deny
children to right to drive, drink alcohol, and marry whom they choose
until they reach a certain age that varies from community to
community. They also vary with time. In my own lifetime, blacks were
not free to use the same drinking fountain or go to the same school
as I did. Pregnant teenagers did not have any say over the fate of
their unborn children and were forced to surrender them forever to
adoption. Women did not have the right to control their own bodies
and many died through illegal abortions. When I was born during WW2,
people were imprisoned in a concentration camp only 100 miles from my
home. They were American citizens who lost all liberties such as
their property, their freedom to live where they wished, and to speak
what they wished, because they were guilty of the crime of having
Japanese ancestors.

The rights of people, at least in America, are evolving slowly. There
are many such latent social rights and civil liberties that have yet
to be established through the democratic process.

There is yet another category of rights and these are not subject to
majority rule of democracy, as Lincoln made clear in his debates with
Stephen Douglas concerning slavery. At that time, in 1858, the
slavery interests in Congress, the Presidency and even the Supreme
Court were powerful, especially after the Kansas-Nebraska Act and the
Dred Scott decision. Many abolitionists believed it was even
possible that another Supreme Court decision, led by the racist Chief
Justice Roger Taney, could make slavery legal throughout all the
states, despite the wishes of individual state governments. Lincoln
said that just because the state democratically decided to strip some
people of the rights enjoyed by others did not mean that the majority
were always right, wise, or that their decisions were forever carved
in granite. Those rights can be given or taken away because they are
civil or social rights. But natural rights cannot be bestowed or
denied by communities, committees, or private individuals. They are
inherent in human nature itself and they are both self-evident and
inalienable. Among these natural rights are the ones promised to
everyone in the Declaration of Independence such as life, liberty,
and the pursuit of happiness. Everyone shares in the possession of
these natural rights. There is no reason in the world that donor
conceived persons are not entitled to all the natural rights
enumerated in the Declaration of Independence. They are as much
entitled to these rights as those conceived from the gametes of their
parents. We are the equal to everyone else in the right, without
asking permission from doctors, to know who we are and who our
ancestors are. Our identities are not merely a matter of indifference
that the public can leave for others to decide through legislative
processes, let alone any medical committee and especially not an
individual doctor or owner of a sperm bank to determine. Denial of
identity is a denial of natural rights. What is a threat to our
natural rights as donor conceived people could just as easily become
a threat to the natural rights of everyone else who values their
ancestry. It is our common liberty as individuals and is not subject
to the presumed power of anyone else to deny to us.

You may take your rights to an identity for granted but you could
lose these. What other principle besides a natural right to identity
would protect your liberty if the government decided, as some people
would wish, that your access to the Donor Sibling Registry be taken
away? There are some people who feel that DNA genealogy sites should
be shut down and perhaps the legislature could be persuaded to do so.
Why? The infertility industry and others see these as a threat and
they want to protect those who feel that their privacy is violated by
this unregulated access to DNA evidence of genealogical connections.
Would you not feel that this is a denial of anyone’s interests or
need to know their ancestry, that it should be their natural right to
do so without governmental interference? How more repugnant is it,
therefore, that a mere doctor can exercise this power of denial over
donor conceived adults who have the same legitimate need to know
their genealogy, not just in the distant past, but their immediate
genetic father?

No one in 1789 could have predicted the controversies surrounding
reproductive issues and so, as we now recognize these as legitimate
interests, we can address legislation to establish equal rights.
First, however, we must claim identity as a right in order to open
the debate, just as it has been done for women’s suffrage, workplace
safety, voting rights, integration of schools, gay rights, and other
pleas for equal justice.

There are a lot of ironies with DI and ART. I find it dismaying that
infertility professionals find offense in the idea that the
government might become involved in restrictions of their work.
Almost any other profession, such as mine in Architecture, has much
stricter regulations than Medicine, and we all dislike some of these
but recognize that our society has a duty to control professions and
businesses in order to protect the welfare of its citizens. It must
be made clear that the self-regulation of medicine and the contracts
that protect the business of clinics have placed tremendous
restrictions on donors, recipients and DI children/adults. Without
regulation, none of these stakeholders have recourse to any means to
redress what we see as discrimination. The clinics and the American
Society of Reproductive Medicine wish to remain the sole power in
making the policies, enforcing their rules, and judging any appeals.

The U. S. Constitution is ambiguous by design, allowing amendments
and Court rulings as the course of human events evolves. It is a
framework that allows the people to have a continual means to shape
this society towards the central ideals of liberty that the
Declaration of Independence expresses for all American citizens (and
mankind). It holds all citizens accountable to protect everyone’s
liberties against the tyranny of those whose power to deny our
rights. This power does not derive from our consent but solely from
the arbitrary will of the infertility profession.

Reprinted with permission from Bill Cordray from the Donor Sibling Registry Yahoo Group.


By admin on March 12, 2008

From a member:

I’m not sure if you are aware of this, but when I contacted ICI in Birmingham, MI I was told that there are two sets of donor numbers. Donors are given a number (i.e. W123) and the recipients see a different number (i.e. T456) for that same donor. I was told they do this specifically to make donation anonymous.