Archive for October, 2011

One of the most enjoyable aspects of attending a large professional meeting like the American Society for Reproductive Medicine Annual Meeting is connecting with colleagues, many of whom I had not yet met in person but had gotten to know virtually either via email or through social media.

Some of the highlights of this year’s conference include several delighting conversations and discussions with the following thought leaders in the infertility field:

Mikki Morrissette:

http://www.choicemoms.org/

It was a pleasure to meet Mikki at ASRM. We discussed the potential option of having members of the Choice Mom community be able to donate directly to other Choice Mom members in either an open or anonymous fashion. While the details need to be worked out, I can’t help but think that the option is there for this group and others who would desire the same.

Barbara Collura

Executive Director of RESOLVE: The National Infertility Association
http://www.resolve.org/about/barbara-collura-executive-director.html

Barb knows everything and everyone about infertility. She is the go-to-person for all issues involving infertility patient advocacy. As always, it was a pleasure and a learning experience in speaking to her. If I need to know what is really going on, she is the person I ask. I think we will be working quite closely together in the months to come and I know I will learn a tremendous amount from her.

Dawn Gannon

Chair-Elect at ASRM Women’s Council
Professional Outreach Manager at RESOLVE: The National Infertility Association
http://www.linkedin.com/profile/view?id=25083876&locale=en_US&trk=tyah

Having spent time with Dawn at other meetings, she is consistently engaging and knowledgeable and always has a smile on her face. She was one of a few women that I knew at the ASRM Women’s Council meeting, where I truly felt like the odd duck out. I know I will see her at other meetings and it is always enjoyable to spend a few moments with her.

Megan Fabian

Manager, Development and Outreach, Nightlight Christian Adoptions
www.Nightlight.org

Sitting next to Megan during the discussion regarding the personhood amendment was an interesting experience. Understanding that Nightlight is a pro-life organization, I winced a few times as speakers spoke about such individuals with condemnation. Understanding that this is a free society, I feel we should embrace their views as we equally embrace the views offered by pro-choice individuals. In speaking with her afterwards, I think Megan saw, perhaps for the first time, why some of us are so very concerned with using the phrase “embryo adoption,” understanding that assigning personhood to embryos would result in a host of unintended consequences that have the potential to change so much in the world of infertility and women’s healthcare. Even though EDI is not faith-based, we clearly had more in common than not in our united desire to reduce the number of cryopreserved embryos discarded or abandoned and building families whenever we can.

Dawn Davenport

http://www.creatingafamily.org/

Dawn is the executive director of Creating a Family, a nonprofit providing a tremendous amount of educationand support for infertility and adoption. While I had the pleasure of interacting with her online, this was my first opportunity to meet her. She is lovely, very bright and quite tall (I say that of many women as I am only 5’7″ on a good day). EDI may very well work closely with her in the future as we all try to decrease the number of cryopreserved embryos discarded or abandoned while “creating a family” where one would otherwise have not existed.

Amy Demma, Esq.

http://www.lawofficesofamydemma.com/

I wish I had a chance to spend a bit more time with Amy as we were both so very busy at this recent ASRM meeting. She is the absolute queen of social media and brings a tremendous amount of expertise, energy and enthusiasm to the medium. Perhaps we will have time to connect in San Francisco at the upcoming American Association Assisted Reproductive Technology Attorneys (AAARTA) meeting. She is a gem and has a wealth of knowledge and contacts in the field of reproduction.

Davina Frankhauser, M.A.

www.fertilitywithinreach.org

This bright and insightful young woman is bringing a much-needed perspective to the world of infertility. She and Sandra O’Keefe founded Fertility within Reach™,which serves as an educational resource to increase access to ART for those who need it. I believe as a field, we will find her knowledge and connections invaluable in advocating for infertility awareness and equality as we protect the rights of the infertile patient while  facing off against those that believe the infertile patient is utterly expendable as they push for the personhood of embryos.

Judy Weiss, R.N.C.

www.aJewishblessing.com

Judy is a “mench,” a doer of good deeds. As a previous egg donor nurse coordinator who has decades of infertility counseling experience, her clear goal is to help find Jewish egg/sperm donors and surrogates for Jewish families. Understanding that many embryo donation centers are faith-based and frequently aligned with Christianity, she understood the ultimate value of Embryo Donation International. Since we are not faith-based and non-discriminatory, and a potential source of donated embryos with Jewish ancestry, she is excited to offer potential recipients our program. In addition, for those Jewish families who have excess cryopreserved embryos, we will provide a conduit to embryo recipients with similar heritage. I can tell we are going to get along great and work together creating families who would otherwise not exist.

Robert L. Klitzman, M.D.

Columbia University College of Physicians and Surgeons
http://www.amazon.com/Robert-Klitzman/e/B001H9TTMI/ref=ntt_dp_epwbk_0
http://en.wikipedia.org/wiki/Robert_Klitzman
http://asp.cumc.columbia.edu/facdb/profile_list.asp?uni=rlk2&DepAffil=Psychiatry

It was interesting that the two of us showed up to the Legal Professional Group meeting, for which we are both members though neither of us are in the legal profession. Robert and I hit it off a couple of ethical dilemmas as we walked to another meeting. I was envious to learn that he had the opportunity to earn his master’s degree in medical ethics. Upon returning home, I soon discovered the number of books he has

written and can’t wait to pour over them. I can’t help but think we have a great deal in common and look forward to getting his input on a host of issues involving embryo donation and reproductive medicine.

Kathryn Kaycoff-Manos

Co-founder, Global IVF
http://www.globalivf.com/

It was lovely chatting with Kathryn Kaycoff-Manos, one of the directors of Global IVF, a Web resource for infertility consumers from all over the world who are looking for information about infertility treatment in

foreign countries. This can mean Americans looking for more affordable treatment options, especially for third party alternatives, as well as people from Europe, South America and Asia who must seek treatment elsewhere because of legal and accessibility restrictions in their home country. I am excited about the potential of collaborating with Global IVF on the international aspects of Embryo Donation International.

This is Part 2 of the Disclosure From the Perspective of the Embryo Donor Offspring series. If you missed Part 1 and want to catch up, please scroll below or click here.

How Should Embryo Donor Offspring be Told About Their Origins?

I wrote in the third segment of this blog series about the best time to disclose genetic identity to embryo donor offspring. I believe that disclosing this information before children are ten years of age may be far better than waiting until they are older, which significantly increases the probability they might be unsettled with the information (Mahlstedt PP, et al. 2010). One of the interesting themes in our surveys has been the consistent finding that the vast majority of respondents would want to know about their origins before age 12 with 91% (10/11) certainly before the age of 18. If Open-Identity were to be practiced in embryo donation, connections between the offspring and the donors may best occur far earlier than what is currently seen with adoption.

Experienced mental health professionals may prove invaluable in helping parents present this sensitive information. Reproductive endocrinologists well versed in this topic may also be very useful in deciding how and when to tell children. Forums where parents can discuss these issues with other parents who have experienced them may also be indispensible.

I soon will be reviewing a children’s book on this very topic, sharing my thoughts about it with my readers. So stay tuned.

What are the Long-Term Consequences of Disclosure?

Members of donor-linked families may have a significant mismatch regarding their levels of hope and expectation about contact (Scheib E, et al. 2008). Some of the participants may have a tendency to romanticize the first meeting and subsequent relationship. My simple recommendation at this time is to move slowly and carefully, without inappropriate expectations.

It is exceedingly important that the relationship between the parents who raised the child and the embryo donor offspring not be harmed, as this is the basis for the child’s stability and home life. The fear that this relationship will be damaged is one of the main reasons recipients prefer to not disclose.

Remember that little is known about long-term consequences following disclosure and the subsequent contact between embryo donor offspring and their genetic parents and siblings. The complex emotional interplay between embryo donor offspring and the parents who raised them, the embryo donors and the offspring’s genetic is completely unknown. This area of research is sorely needed.

In our most recent survey, 68% of the respondents would tell immediate family, their own children and their significant partners about their embryo donation origins. The only hesitancy involved friends with 40% (4/10) stating that they would not disclose. Once again, the long-term consequences of disclosure remain uncertain with some societies and religions perhaps being less than welcoming to an embryo donation-conceived individual. It would be irresponsible for us as clinicians to assume that all will go well. We must remain cautious and counsel our patients carefully and individually until we have more information to help guide them.

Will the Embryo Donor Offspring Be Hurt by Not Being Told?

Studies that have specifically examined the psychological well being of embryo donation offspring indicate that embryo donation families, independent of disclosure decisions, are faring well (MacCallum F, et al. 2007 & 2008). Warm parent-child relationships and positive child development have been documented although few of these donor embryo-conceived children have yet entered adolescence (Golombok S, et al. 2006). While more data and follow up studies are certainly needed, embryo donation children do not seem to be at increased risk for developing psychological problems during early and middle childhood, regardless of disclosure decisions. The children that were not told of their origin were do as well as those who were told.

Children whose parents do not tell them about their embryo donor origin cannot suffer from lack of disclosure.  Whether the parents tell or not, there is research to show that embryo recipient parents may be more attentive and warm to their offspring than natural conception parents.

While not definitive, the research we have so far suggests that disclosure decisions, either for or against, will not cause irreparable harm to the embryo donor-conceived individuals or the parents who raise them.

Summary Comments

Currently, the legal rights of embryo donors and recipients override the strong desire of embryo donor offspring to learn more about or even meet their donors. There is a push to mandate disclosure, but the consequences in the world of embryo donation may be dire. It is quite likely that more embryos will be discarded or abandoned before donors will be forced into an open-identity process.

Using terms such as “mother” and “father” for those who raised the embryo donor offspring should be maintained. The terminology that is used to describe the embryo donors can get confusing. It is my personal choice, but “donor mom ” and “donor dad” seem the simplest and kindest to all.

Reproductive facilities need to prepare for disclosure requests and adhere to record retention guidelines, whenever possible, to avoid unfortunate lapses in information and potential legal consequences.

I understand a donor-conceived individual’s strong desire to know more about their donors. I believe that providing the donor’s medical, surgical, psychiatric, family and social histories is quite reasonable when disclosure occurs. However, providing actual identifying information needs to be handled carefully and thoughtfully. Impartial research to examine the long-term consequences of open-identity issues in embryo donation is sorely needed.

Since physicians take an oath to cause no harm, we all need a bit more information and guidance in caring for our patients, embryo donors and recipients. We must never forget, however, the embryo donation-conceived individuals, who were never our patients, are still owed thoughtful care and tremendous compassion. We have much to learn from them.

References:

Beeson DR, Jennings PK, Kramer W. Offspring searching for their sperm donors:  how family type shapes the process. Hum Reprod. 2011 Sep;26(9):2415-24.

Daniels K. The controversy regarding privacy versus disclosure among patients using donor gametes in assisted reproductive technology. J Assist Reprod Genet. 1997 Aug;14(7)-373-5.

De Jonge C, Barratt CL. Gamete donation- a question of anonymity. Fertil Steril. 2006 Feb;85(2)-500-1.

Klock SC. The controversy surrounding privacy or disclosure among donor gamete recipients. J Assist Reprod Genet. 1997 Aug;14(7)-378-80.

Golombok S, Murray C, Jadva V, Lycett E, MacCallum F, Rust J. Non-genetic and non-gestational parenthood: consequences for parent-child relationships and the psychological well-being of mothers, fathers and children at age 3. Hum Reprod. 2006 Jul;21(7):1918-24.

Guido P. The reduction of sperm donor candidates due to the abolition of the anonymity rule: Analysis of an argument. J Assist Reprod Genet. 2001 Nov;18(11)-617-22.

MacCallum F, Golombok S, Brinsden P. Parenting and child development in families with a child conceived through embryo donation. J Fam Psychol. 2007 Jun;21(2):278-87.

MacCallum F, Keeley S. Embryo donation families: a follow-up in middle childhood. J Fam Psychol. 2008 Dec;22(6):799-808.pdf

Mahlstedt PP, LaBounty K, Kennedy WT. The views of adult offspring of sperm donation: essential feedback for the development of ethical guidelines within the practice of assisted reproductive technology in the United States. Fertil Steril. 2010 May 1;93(7):2236-46.

Ravitsky, V. & Scheib, J.E. (2010). Donor-conceived individuals’ right to know. Hastings Center Bioethics Forum 2010;40:(4).

Scheib JE, Ruby A. Contact among families who share the same sperm donor. Fertil Steril. 2008 Jul;90(1):33-43.

Shehab D, Duff J, Pasch LA, Mac Dougall K, Scheib JE, Nachtigall RD. How parents whose children have been conceived with donor gametes make their disclosure decision: contexts, influences, and couple dynamics. Fertil Steril. 2008 Jan;89(1):179-87.

In an Open Embryo Donation procedure it is likely the embryo donor-conceived individuals will be told of their origin. In an anonymous procedure, however, it is up to the embryo recipient parent(s) to make disclosure decisions. Reproductive endocrinologists are normally focused on the donor’s and the recipient’s legal rights/rights to privacy and we probably loose sight of the offspring’s point of view. These next two segments will examine this potentially neglected perspective: those of the children and adults created through embryo donation.

Do Embryo Donor Offspring Have The Right to Know Their Origins?

Many donor-conceived person feel they have a perceived right and a strong desire to know their genetic origins (Shehab D, et al. 2008). From an ethical perspective, these individuals feel disclosure of their true genetic origins involves principals such as honesty, trust and respect.

Embryo donors and recipients, who may prefer an anonymous process, seem to have rights that compete with those of the donor-conceived individuals. In reality, both embryo donors and recipients have legal rights that are in direct contrast to the offspring’s moral view that family secrets shouldn’t be hidden.

There is a very vocal and select group of egg and sperm donors who feel disclosure should be mandatory. It should be understood, however, that we are probably not hearing from those embryo donor-conceived individuals who have been told of their origins, but who are less vocal, perhaps feeling that disclosure should not be mandated or legislated. We simply do not know if this is a silent minority or majority.

In many ways, there is no easy way to reconcile these contrasting legal rights and moral perspectives. Most agree, at the risk of offending those who feel differently, that in  society ruled by law, that a legal right ultimately trumps a perceived moral right. Thus, the legal rights of donors and recipients continue to prevail in this country.

That stated, if individuals are told they came from donated embryos, it is natural to expect they will want more information.

Why do Embryo Donor Offspring Want Disclosure?

While perhaps not directly comparable, those sperm and egg donor-conceived offspring who are seeking information about their donors often do so for the following reasons  (Ravitsky V, et al. 2010 & Mahlstedt PP, et. al. 2010):

• Curious about donor physical characteristics and personalities
• Desire a better understanding of their own genetic identity
• Have medical concerns (medical, family and social history)
• Want to meet the donor
• Want to understand the motivations of the donors
• Want to provide an ancestral history for their own children

For children born to a single woman or a lesbian couple, finding out more about the donors may increase their sense of kinship. Open-identity systems are being driven forward, in part, through single women and lesbian couple donor sperm recipients. These recipients are also the most likely to disclose because their social situation essentially requires it.

For many, the search for their donors may go well beyond seeking just simple information. In two recent studies of offspring searching for their donor sperm fathers, with about half over the age of 18 and half under, between 80-88% were intensely curious about their donor and wanted to contact them. Up to one-third desired an actual relationship with the sperm donor (Beeson DR. 2011 & Bahlstedt PP, et al. 2010). It should be understood, however, that support group studies such as these might not represent a balanced patient sample.  Donor offspring who are not bothered by the issue are less likely to seek information/support via the web and are, therefore, not enrolled in such studies. Interestingly, our recent survey on this same topic yielded nearly identical results with 82% (9/11) respondents wanting medical and/or identifying information on their embryo donors.

What do Embryo Donor Offspring Call Their Donors and Recipients?

Here are some terms commonly used to describe embryo donors and embryo donor recipients from the perspective of the offspring who have been told they were created though embryo donation:

Embryo Donors	Embryo Recipients
Donor mom/dad Embryo donor mother/father Genetic mother/father Biologic mother/father	Mother/father Social mother/father Legal mother/father Nongenetic recipient/parent Adoptive mother/father

These important labels have emotional connotations and I have listed them here in my personal order of preference.

Are Reproductive Facilities Prepared for Disclosure?

In general, reproductive facilities may not be adequately prepared to handle embryo donation disclosure issues. Medical providers’ first reaction will be to protect their patients, the donors or recipients. Nondisclosure of medical information is actually required by state and federal statutes and clear consent must always be provided before medical/identifying information is released to any third party.

Most reproductive facilities are totally unaware of the adoption literature that universally advocates disclosure. Clinicians will want conclusive embryo donation studies before they will consistently recommend and comply with disclosure. They will also want to be insulated from any legal consequences should disclosure occur.

Most medical practices will be operationally challenged to have records available years after procedures are performed. Most states require medical records to be retained for seven years. The FDA requires charts involved with third party conception techniques to be kept for 10 years, while the ASRM suggests they be stored indefinitely. Being able to identify those particular charts from the others charts is a logistical challenge. In my practice, we color-code the charts involving any type of donor material, making them easy to pull and save.

In the case of natural disasters, paper charts may be destroyed. It is common sense that the medical practice should also save the information in electronic form with offsite back up. Keeping in mind that electronic document formats are constantly changing, we currently suggest documents be saved in the common “pdf” (Adobe Portable Document Format) file format, and keep the medical and identifying information separate.

I also feel embryo recipients have a responsibility to keep the information about their embryo donors protected and safe just in case the practice’s medical records are ever lost or deleted.

We will continue this discussion, on disclosure issues from the perspective of the embryo donor offspring, tomorrow. Included will be discussion of whether or not reproductive facilities are prepared for disclosure, long-term consequences and how to tell the offspring. The reference list will also be posted with the second half. Stay tuned!

Brief Introduction

This is the fourth of a five-part series examining the complex decision-making surrounding the disclosure of the genetic origins of embryo donor offspring to family, friends and the offspring themselves. There were 11 respondents with the results examined below.

Associated Blog Segments

The first segment of this series introduced the disclosure topic and our first survey. The second segment (Part 1 and Part 2) examined disclosure issues from the perspective of the embryo donor, incorporating a survey that asked opinions from our readers.  The third segment (Part 1 and Part 2) examined disclosure from the perspective of the embryo recipient, including our final survey. The results are discussed below.

Survey Results: “Imagine You Were an Embryo Donor Offspring”

1. Regarding the topic of disclosure of my genetic origins:

I would not desire to know that I was created through donated embryos. The parents who raised me are simply my parents and it doesn’t really matter if I came from donated embryos.	18% (2/11)
I would like to know all the available medical information about the embryo donors. I would not, however, want identifying information.	46% (5/11)
I would like to know all the available medical information about the embryo donors. In addition, I would like to be provided identifying information.	36% (4/11)

Comments:
In this small study sample, the majority [82% (9/11)] wanted to know medical information about their embryo donors, with about half wanting identifying information. These numbers are similar to published data on the desires of egg and sperm donation-conceived individuals.

2. If I were to be told about being an embryo donor offspring, I would want to be told (choose only one):

• Sometime during ages 1-6 years old            55% (6/11)
• Sometime during ages 7-12 years old          18% (2/11)
• Sometime during ages 13-18 years old        18% (2/11)
• After age 18                                                            9% (1/11)

Comments:
The majority [91% (10/11)] would prefer to be told of their embryo donor origins before the age of 18, with most wanting to know at 12 years of age or younger. As I wrote in the previous blog, disclosure to the embryo donor-conceived individual after age 10 tends to result in feelings of mistrust, alienation, identity confusion, frustration and even hostility towards their family (Ethics Committee, 2004 & Mahlstedt PP, et al. 2010).

3. If I were provided medical and identifying information about the embryo donors, I would do the following (choose only one):

I would not try to contact the embryo donors.	55% (6/11)
I would try to contact the embryo donors but am most interested in learning about and potentially contacting my blood brothers and sisters.	45% (5/11)
I would try to contact the embryo donors to establish a relationship with the genetic parents and my blood brothers and sisters.	0% (0/11)

Comments:
About half of those polled would not try to contact the embryo donors while the other half would be interested in contacting their genetic siblings. Published articles on the topic suggest that most donor-conceived individuals are more curious, with many wanting to meet their donors. I believe that if given the contact information, most embryo donor-conceived individuals will become quite curious over time and will eventually want to interact with their genetic siblings and/or the embryo donors themselves.

4. If I found out that I was the product of embryo donation, I would tell the following people:

Relationship	Yes	No	N/A (not alive or no current relationship)
My “significant other”	91% (10/11)	0% (0/11)	9% (1/11)
My in-laws	60% (6/10)	10% (1/10)	30% (3/10)
My children	60% (6/10)	10% (1/10)	30% (3/10)
My friends	60% (6/10)	40% (4/10)	0% (0/10)
Average:	68% (28/41)	15% (6/41)	17% (7/41)

Comments:
If one removes the “N/A” category, which didn’t pertain to some of the poll respondents, the majority of embryo donor-conceived individuals would tell their immediate family about their genetic origin, especially to their “significant other.” It would appear, however, that there was some hesitation to tell their friends the same information.

Tomorrow we will release the next installment of this series – Disclosure Issues From the Perspective of the Embryo Donation Offspring. This will be released in two separate sections with the second half released the day after the first.

Next week, we will release our final summary of this series, combining the perspectives of the embryo donors, embryo recipients and embryo donation-conceived offspring.