Workshop 4.3: Ethical Issues in New Reproductive Technologies

Ethics and Accountability Conference
Sponsored by Ethica and Evan B. Donaldson Adoption Institute
October 15-16, 2007

Bullet points for discussion during Workshop 4.3:

• Which ethical issues in adoption should apply to the professionals, donors and recipients of new reproductive technologies – and which should not?


• Are there aspects of new reproductive technologies that raise questions related to “the best interest of the child”?


• Are there ethical issues that require attention regarding donors’ and recipients’ participation in these technologies?


• What laws, policies and “best practices” should be applied to reproductive technology practitioners, donors and recipients in the U.S.?

Panelists:

Jean Benward, LCSW is a psychotherapist with over 25 years of experience in the areas of adoption, infertility, and donor conception. In her private practice, she works with adoptive families, adoptees, and individuals considering use of donor gametes for family formation. In 1994, Ms. Benward joined the American Society of Reproductive Medicine (ASRM), where she has spoken at several symposia and postgraduate courses. She served as a member of its Mental Health Professional Group (MHPG) Executive Committee for seven years, is former MHPG chair and former co-chair of its donor registry task force. She has presented at conferences of the ASRM, the American Society for Bioethics and Humanism, the Evan B Donaldson Adoption Institute, the American Adoption Congress, and Resolve. Ms. Benward currently is co-president of the Board of Directors of the Sperm Bank of California and has been a consultant on the Sperm Bank’s identity release task force for seven years. Her clinical background includes several years as a clinical supervisor and adjunct professor, training graduate students in child and family therapy and providing consultation to the staff of child treatment programs. Ms. Benward holds an undergraduate degree from Barnard College and a graduate degree from the Columbia University School of Social Work.

Naomi Cahn is Associate Dean for Faculty Development and John Theodore Fey Research Professor of Law at George Washington University Law School. Her areas of expertise include family law, reproductive technology, and adoption law. She has written numerous law review articles on family law and other subjects, and has co-authored several books, including Contemporary Family Law (Thomson/West 2006), Families By Law: An Adoption Reader (NYU Press 2004), and Confinements: Fertility and Infertility in Contemporary Culture (Rutgers University Press 1997). Her current project is a book tentatively titled, The Parent Plan: A Legal Examination of the Means of Collaborative Reproduction (forthcoming NYU Press). She is the Legal Intersections Co-Editor of Adoption Quarterly. From 2002 to 2004, Professor Cahn was on leave in Kinshasa, capital of the Democratic Republic of the Congo. Prior to joining the faculty at George Washington in 1993, Professor Cahn practiced with Hogan & Hartson in Washington, DC, and as a staff attorney with Philadelphia’s Community Legal Services, where she represented clients in the abuse and neglect system.

Bill Cordray is an architect practicing in Salt Lake City, Utah and an advocate for people conceived through donor insemination (DI). Mr. Corday was born through DI conception in July 1945; at age 37, his mother disclosed his conception. Since that time, he has been an outspoken critic of reproductive technologies in the media, at conferences, on the Internet, and on an interpersonal level. His work focuses on eliminating secrecy within DI families, promoting early disclosure to children, ending anonymity in gamete donation, and proclaiming the retrospective right of access of DI adults to the identity of their mother’s sperm donor. Mr. Cordray’s web site seeks to give a voice to the rapidly growing numbers of DI adults who want to speak freely about their experiences. Mr. Cordray regularly presents at conferences on DI. He has appeared in television interviews and documentaries in Utah, in the US national media, and in the media of Canada, Germany, France, the United Kingdom, Australia, and Japan. Mr. Cordray holds a BA in English and a Masters in Architecture from the University of Utah.

Susan Golombok is Professor of Family Research and Director of the Centre for Family Research as a member of the Faculty of Social and Political Sciences at the University of Cambridge, England. Her research examines the impact on children’s social, emotional and identity development and on parent-child relationships when children are reared in new family forms. Her work has focused on these issues in relation to lesbian mother families, solo mother families, and families created by assisted reproduction procedures such as in vitro fertilisation (IVF), donor insemination, egg donation and surrogacy. Professor Golombok is the author of Parenting: What really counts? and co-author of Bottling it up, Growing up in a lesbian family and Modern Psychometrics.

Adam Pertman, Executive Director of the Evan B. Donaldson Adoption Institute, is also the Associate Editor of Adoption Quarterly, the premier professional journal in its field, and is the author of Adoption Nation, which was named Book of the Year by the National Adoption Foundation and has been reviewed as “the most important book ever written on the subject.” He was nominated for a Pulitzer Prize for his writing about adoption in The Boston Globe, where he was a senior reporter and editor for 22 years before turning his career toward adoption. Pertman’s other honors include: the Angel in Adoption Award from the U.S. Congress; the Special Friend of Children Award from the American Academy of Child and Adolescent Psychiatrists; the Friend of Adoption Award from the ODS Adoption Community of New England; the Dave Thomas Center for Adoption Law’s first award for “the nation’s greatest contributor to public understanding about adoption and permanency placement issues”; the American Adoption Congress’ first award to the journalist who has done most to inform our nation about adoption and “for his eloquent witnessing of contemporary adoption”; and the Year 2000 Journalism Award from Holt International Children’s Services.

Jean Benward

• Her professional career started 25 years ago working with adoption issues. 15-20 years later, her professional focus moved to reproductive technology issues especially donor conceived families


• People in adoption tend to feel strongly about the similarities between adoption and donor conception. Professionals and families affected by donor conception tend to not feel that adoption is a model that can be translated.


• Similarities between adoption and donor conception:
  Premises and belief that there is shame and secrecy, families formed this way dealt with stigma and isolation, power held by professionals, birth parents deemed invisible and deemed important to banish them from families they helped create.
  In 1970s, begin to see the voices of adoptees and birth parents resulting in grassroots change in adoption practice. Openness is valued, birth parent connections deemed important and of significance to adoptees, families are supported in the larger community with resources, laws changed, and adoptees are supported in search.
  Donor conception is pretty much the same since when it began until relatively recently. There is an emerging change in how people think about donor conception. ASRM goes on record of advocating disclosure of donor conception to offspring. Now seeing grassroots efforts outside of professionals where people are seeking to connect with each other. Identity release programs guarantee offspring identifying information about sperm donors. Abolition of anonymity is becoming increasingly widespread around the world. In other countries, donors cannot be anonymous.
  In the environment in which donor conceived families live, there is a tremendous amount of stigma and emotional impetus behind fear of disclosure.


• How are donors viewed? As biological fathers? People in adoption tend to put them in same category as birth parents, but donors go into this not thinking of offspring as children of the type one nurtures and lives with. On the other hand, they have significant meaning to offspring and vice versa but we don’t have a vocabulary for understanding these connections. Offspring and donors will help create the context for understanding these connections.


• Ethics – both fields face identical issues, for example, the role of commercialism, how the practice is market driven, participants are subject to exploitation, professionals still assume power in the transactions, and issue of openness.

Naomi Cahn

• Her husband is an adoptee who searched about 10 years ago and that has influenced her perceptions in much of this field. Before he searched, she went through a reproductive technology clinic where donor eggs were suggested. She did not go that route, but her reaction guides her as she thinks through much of this.


• Similarities between adoption and reproductive technology: forming families with outside help. Issues of tort suits that overlap with respect to misrepresentations, issues of fertility tourism, and overlap in professionals involved in both fields.


• Enormous differences between adoption and reproductive technology: Completely different sets of regulations. Adoption is in many ways far ahead of reproductive technologies. Fundamentally different assumptions in each field: adoption at least pays lip service to best interest of child. Best interest of the child is not a hallmark of reproductive technology world. Children’s interest are starting to assume more importance as offspring are coming forward, but it is a very consumer-driven field as a result of lack of regulation. To create a new adoptive relation requires a court order but there is practically no legal involvement in the context of reproductive technology.


• Statistics in the reproductive technology field: There are more than 400 fertility clinics nationwide, $3 billion annual business, in 2004 130,000 IVF cycles in the U.S. with 50,000 IVF babies born, half a million frozen embryos, the Society for Assisted Reproductive Technology estimates 9,000 donor egg children born in the U.S. in 2005, and an estimated 30,000 donor sperm conceived children born annually. Language in both fields is evolving as there is more sensitivity. Sperm providers and egg providers are not donors.
  Unlike adoption, where from the mid 19th century has been distinguished by laws, gamete technology developed with secrecy and little regulation. First known donor conception was in the late 19th from a physician on a woman who never realized there was a donor outsider her husband.


• Market forces are strong and well entrenched and there is not same advocacy for best interest of the child. Little incentive to regulate this field further because clinics make a lot of money and parents are willing to pay a lot of money in order to have children. Gamete providers are often in this to make money and so regulation will affect their source of income and many donor conceived children don’t know they are so there is no strong advocacy group there, either. Federal law regulates the safety and health of donated tissue including sperm and eggs which are regulated primarily against transmission of AIDS. About 35 states deal with parenthood issues when it comes to sperm, only 4-5 states when it comes to eggs and only 1-2 states when it comes to embryos: Louisiana and Florida. There is some movement to limit prices but studies show it is not successful because there is state oversight over adoption but not the reproductive technology system.


• For the future, secrecy in both areas is starting to crack a bit. Parenthood issues to be resolved.
  

Bill Cordray

• Donor insemination in his point of view is a form of adoption. He has a problem with perceiving it as something else. It comes from the fact that the language is determined by the medical profession so people are asked to believe all we are dealing with are tissues. When we see sperm, think original father; embryos, original families; eggs, original mothers. Sperm, eggs and embryos are part of adoption too.


• DI people don’t have much of a voice. He is reluctantly taking that role because few are doing it. He wants to take command of how language is forming and how we see ethical issues by humanizing it. He is tired of being infantilized. He doesn’t want to use best interests of child for determining ethics, but rather, the best interests of vulnerable human beings who have no say in how contracts or transactions are occurring.


• DI has sociological and psychological issues that the medical profession does not see because they see the end as the baby in the cradle.


• 2 other common axioms:
  1. adopted person is anyone who has no connection to genetic parents, therefore, he considers himself an adopted person because he doesn’t know who his birth father is
  2. DI people have a right to know about their origins and have this info disclosed to them. This is not happening in many DI adoption families. He likes to focus on DI because it is the primary way reproductive technology families are being formed.


• Differences between DI and traditional adoption: Lack of regulation. There are contracts signed by donors and by prospective adoptive parents that require they not try to find the identity of the other person. Legal aspects are strange because the medical profession is treating it in a laissez faire manner in the U.S. so anything the doctor does is right and ethical because they have a code of ethics, but in reality, it has evolved into a business and is the least regulated of all medical branches and technically is not medicine. Anyone can be involved in donor insemination with a turkey baster.


• Best practices and laws that should apply: There should be independent counseling that ensures true informed consent. The lack of informed consent is astounding. Clinics don’t even know the truth of what it means to be conceived through anonymous gametes. Part of human fabric, texture and makeup of child and should not dehumanize it.


• We need mechanisms to ensure disclosure and take away liberty of contract clinics enjoy because it is not a valid legal stance in the medical profession. These records need to belong to the courts like in adoption. Records ought to be considered a property right of identity to offspring. It’s about time we started honoring the United Nations Convention of the Rights of the Child.


• As in adoption, DI individuals don’t have their original birth certificates either.
  
  

Susan Golombok
Discussed ethical issues with respect to different kinds of reproductive technology:

1) “high tech” families – involves, procedures such as IVF, ICSI, and sometimes gamete donation. Kinds of concerns raised:

• Theory that parents who have gone through years of infertility and have a very much wanted child will be overprotective parents and will have high expectations of their child or themselves as parents which causes tension and stress in family. In summarizing findings of many studies worldwide, these concerns about these families are unfounded. If anything, studies show quality of relationships are in a sense more positive.


• One area where there is a problem is in high number of multiple births. 1% of natural births result in multiples. With high tech procedures, usually 25-33% of pregnancies result in multiples. With multiples, there is an increased rate of prematurity and health related problems, disability and psychological functioning e.g., language development and for parents themselves, especially those who have triplets or more, experience extreme stress with large numbers of children growing up at same age. Some European countries have legislated only 1-2 embryos can be transferred whereas there is no legislation in the U.S. Should the number of embryos that may be transferred be limited?

2) gamete donation

• A number of groups have carried out large scale studies of children conceived through gamete donation. Generally, the children don’t seem to be in any way experiencing psychological problems as a result of this method of conception but a striking finding is that a majority of parents until recently have not disclosed donor conception origins. More recent studies have shown disclosure to children in very early years seems to be the best way. There is a movement toward openness.


• Donor siblings, donors and parents are making contact. Some have found up to 55 siblings. When there has been contact, there has been generally a positive experience.
  

3) Non-traditional families – includes same sex parents and single heterosexual women who have conceived through donor insemination.

• We now have 30 years of research for same sex parents with no evidence of problems that were thought would arise


• There is less research available with respect to single parents.

4) surrogacy

• One study in UK follows children at ages 1, 2 and 3 with NIH funding to study at ages 5 and 7.


• Should restriction be placed on the number of embryos that may be transferred? Should offspring have access to the identity of donors? Who should be donors, for example family members? Should donors be paid? Should parents be screened?
  
  

Questions:

1. Adam Pertman commented that he could not understand how one could not tell the child about the donation. How do they deal with their medical history?

Cordray: He is creating his own research on the attitudes of donor-conceived adults.

2. A member of ASRM and RESOLVE commented on the importance of counseling. She has had women who are pregnant through egg donation who are considering abortion because they have not been helped with their feelings and they feel like they are carrying an alien. ASRM took the position of advising disclosure to children last year.

Benward: Having been on both sides, she notes that families conceived by donor conception still face a huge amount of stigma and hold a lot of pain whereas it’s easier for adoptive parents to find support. The idea of overprotectiveness represents a stereotype and stigma and disapproval of families formed thru ART. There is a great deal of unacceptance and negative assumptions about parents who have conceived through ART.

Cahn: More recent studies on adoptive families have found little difference in parenting and in fact, parenting qualifies as extremely good.

3. A director of an adoption program in California presented a dilemma she faced. A couple approached her agency to adopt. They had two children from her eggs and her husband’s brother’s sperm and they were not going to tell the children. Now they wanted to adopt and were open to open adoption. She made a decision to say no to that family because she felt like their children were adopted too and she was concerned the adopted child would find out. The family was incredulous. She felt her responsibility was the best interest of adopted child and there was no shortage of families because the child was a newborn.

Cordray: Commented that this happens quite a bit in DI families.

Someone commented that increasingly folks getting donor insemination are getting counseling and can get them to a point where they are open to disclosure. It’s harder for family to keep the secret over the long haul. Often, 5-10 people know outside the child.

4. A student at Duke University/adoptee commented that shame and stigma is not an option for lesbians who are trying to get pregnant. She also asked for feedback on fertility tourism where industries are developing in places like India and people are traveling from wealthier countries to other countries. She has serious concerns about this as an adoptee.

Cahn: studies show same sex parents or single parents are most likely to disclose facts of conception to their children. Regarding fertility tourism, there are the same issues of exploitation as in adoption. It is also a way of completely escaping regulation. In adoption, have to finalize the relationship, but not in fertility tourism

Golombok: Paradoxical because in some countries, surrogacy has become regulated or subject to legislation so people travel to other countries where it is allowed.

5. A mother/lawyer asked if there are studies following surrogates and egg donors to see how well they are doing? The egg donor is having invasive surgery and is in desperate need of independent counseling, but women usually give eggs because of big bucks and do not get independent counseling and are every bit as vulnerable as birth mothers.

Cordray: They are birth mothers.

Golombok: Egg donor studies have been done by Andrea Braverman. Vasanti has taken the lead in following up with 34 surrogate mothers two years after birth of the child.

Benward: Have seen egg donors interviewed and screened. It does them a disservice to see them as victims. They are adult, competent women who should be treated as such. Granted, as fees go up, it induces women to lie or do it if they otherwise wouldn’t. She has met many women over the years who like the money, but that isn’t the only reason they do it. It is not easy to find egg donors and many who have donated have thought about it for a year, researched it and talked to family about it.

6. A self-identified queer/bastard wanted to address the language issue. As an adopted person, it is painful to hear Bill say we are not children. It is very difficult in these conversations to hear that the people who are the result of these processes are children and don’t have legal rights. It would be really nice if they were treated as free agents within the course of these conversations. Words like “offspring” and “children” are very difficult to hear from her perspective. Concerned about language like “donor” because so much comes down to money and calling them donors hides that.

She has looked into the way the U.S. is treating frozen embryos. There are a set of laws prohibiting frozen embryos from being destroyed. In Louisiana, embryos can be defrosted to be implanted in a married woman for the prospect of pregnancy. One and only option is that embryos end up in snowflake adoption which is really embryo transfer.

Usha