Welcome to your January 2006 issue of Connections, the American Fertility Association’s monthly e-newsletter. In this issue, you’ll find:

1. Message from the Executive Director
2. Web Access to SART Clinic ART Data, by William E. Gibbons, M.D., President, SART
3. Frozen Embryos: Dilemmas, Debates & Disposition, Nanette R. Elster, JD, MPH
4. Choosing a Domestic Adoption agency, Donnamarie G. Jones, LCSW
5. Winter 2006 Adoption Series
6. Free Teleconference Coaching Sessions
7. Save the Date: Sunday, May 7, 2006 - Family Matters Annual Conference
8. Connections Online Educational Sessions

A Message from the Executive Director

Pamela Madsen

Dear Friend, If you're trying to have a child and facing reproductive difficulties, or if you'd like to adopt, you believe that family matters -- and so does The American Fertility Association. Mark your calendars and register to attend "Family Matters", our annual spring conference on Sunday, May 7, 2006. Dozens of world-renowned fertility experts will be on hand to answer your fertility and adoption questions and to guide you on your family building journey. To register or for more information, please visit www.theAFA.org/events. We strive to provide you with trusted information from experts, whether you're choosing a fertility doctor or an adoption agency. In this issue, I invite you to read two terrific articles that will help you make informed choices: one from SART President Dr. William Gibbons on IVF success rates, and the other from Donnamarie Jones's on choosing a domestic adoption agency. Adoption is a beautiful and rewarding family building option, one that has fulfilled the lives of so many. For one-on-one adoption guidance, register for our Winter Adoption Series. Over the past year, frozen embryos disposition has drawn much attention and controversy. Nanette Elster's thought-provoking piece on this timely topic is a must-read. My husband and I know first-hand what a heart-wrenching decision frozen embryo disposition can be for couples or individuals. I even wrote about our experience in an opinion editorial in the Boston Globe. New controversies always sprout up, but you can rest assured that The American Fertility Association will advocate on behalf of all patients, will continue to protect fertility patients' choices, and will continue to provide the most trusted family building information. I look forward to your continued support this year. Here's to embracing the possibilities! Warm regards Pamela

When the CDC indicated that it wanted the CDC ART reporting system to move to a more standard government/contractor/contractee relationship and away from a ‘partnership’ with SART, SART felt that this was an opportunity to encourage expanded use of the dataset by our members. A SART member dataset would allow more research objectives to be followed, allow a check and balance with the CDC data set (SART clinics make up more that 90% of US cycles), and allow the opportunity for more rapid communication of the data to patients. Because there are costs involved with this, the SART Executive Council is pleased that over 90% of member clinics agreed.

By going to the SART web site (www.SART.org or www.SART.com ) patients will see a ‘hot’ button labeled “SART Outcome Reports”. Clicking on this will produce a national map. From there, couples may click on an individual state or enter a ZIP code and request clinics within a certain distance from that ZIP code. A listing of SART clinics is then provided. When the clinic page is opened, clicking on “2003 ART data Report” provides that clinics results provided by age group, fresh or frozen cycle attempt, or donor results. Further, a couple can click on a specific diagnosis and see the results displayed by age group. If the 2003 ART data Report states, “No report available for this clinic”, it means that this clinic has chosen not to report their data through the SART system.

As always, SART wants couples to know that it requires very large patient datasets to validly compare the success of one clinic with another. For example, there is no significant difference between clinics in which one reports a pregnancy rate of 37% and another reports 43% or 45%. SART is planning to work with the leadership of patient organizations to determine if perceived differences in results have an adverse effect on the rate of multiple pregnancies.

I would also suggest that when you visit the SART web site that you visit the handbook, “A Patients Guide to ART”, under the home page button “Patient Handbook”. This contains a great deal of helpful information. We have had requests from clinics and web sites in Europe to reproduce it.

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Frozen Embryos: Dilemmas, Debates & Disposition
Nanette R. Elster, JD, MPH
Spence & Elster, P.C.

A survey conducted in 2003 indicated that nearly 400,000 embryos are cryopreserved in the United Statesⁱ. With the current estimated number of embryos in storage, informed decision making has become imperative. Most patients have chosen to freeze their embryos for their own useⁱⁱ. Less than 3% of cryopreserved embryos are designated for donation to research and slightly over 2% are earmarked for thawing without transfer or donation to other couples for their family buildingⁱⁱⁱ. The abundance of stored embryos has become an issue of great concern. What can or should happen to these embryos once couples or individuals no longer wish to use them? Who should decide? When should the decision be made? Some events may, in fact, trigger an embryo disposition such as: divorce/disagreement, death, abandonment, or the closure of the fertility program.

Much of the debate centers on the status of embryos – are they persons? Are they property? Or, are they somewhere between person and property? The answer may differ based on religious views, cultural perspectives or personal opinion making it difficult to arrive at any national consensus. However, there is at least some agreement in the law that embryos are entitled to a heightened level of respect falling somewhere between person and property^iv. This, though, does not necessarily inform one’s personal decision making.

Dispositional options for stored embryos include: creating only as many embryos as will be used (to avoid the issue of having embryos to store); storing them indefinitely; thawing them; donating to other couples; and donation to research. Some or all options may be available depending upon the policy of your fertility center as well the laws of the state in which the embryos are stored. For example, in Louisiana, state law prohibits destruction of embryos^v and legislation has been introduced in West Virginia which provides that no frozen embryo within the state “shall be intentionally destroyed, nor . . . transported to another state or any other location for the purpose of destruction.” ^vi

Limit the number of embryos created
Several countries including, Germany and Italy limit the number of embryos that can be created in an IVF cycle eliminating the issue of stored embryos. While this may be an acceptable choice for individuals or couples undergoing IVF the likelihood of any legal mandate to being supported by the medical community is unlikely and raises some ethical dilemmas. The reasons for creating multiple embryos include reducing the number of times a woman will have to undergo an egg retrieval and therefore limiting her exposure to the risks of a surgical procedure; limiting the use of ovulation suppression and stimulation medications; the inability to determine in advance which eggs will fertilize to form the highest quality embryos; and the ability to enable patients to have subsequent attempts to conceive or to have siblings without bearing the financial burden.

Thawing
Thawing embryos ultimately results in their destruction. For some patients and members of society more generally, however, this is tantamount to the destruction of human life,^vii which is why this option has become increasingly more controversial in the US. Nevertheless an Australian study indicated that 89.5% of couples opted to discard their embryos.^viii The controversy has made it even more important that patients understand the full range of options available to them.

Indefinite Storage
Indefinite storage may be the ultimate non-choice. For some, however, religious views may make this the most acceptable “disposition” with the hope that more comfortable alternatives may develop in the future.^ix For others, this is not necessarily a conscious choice but the result of a range of circumstances including losing contact with the fertility center, moving, etc. The American Society for Reproductive Medicine has issued guidelines stating that embryos may be considered abandoned and subsequently permitted to thaw if 5 years has elapsed since contact with the couple and reasonable attempts have been made to locate them.^x If individuals or couples continue to have contact with the fertility center, pay storage fees, and maintain the decision to store embryos, this may continue to be a choice for some.

Donation to Research
“The donation of spare human embryos for important medical research that cannot be conducted by other means is ethically superior to either destroying them or keeping them perpetually cryopreserved.” ^xi

This sentiment was recently echoed in testimony by Republican Senator Gordon Smith who said “the best thing you can do with embryos is obviously to create a human life. They are a building block of human life. The next best thing to do, if they are to be left in a science lab, is to find cures. . . The worst thing that you could do is throw them away.” ^xii

The types of research that may be done vary and may include stem cell research, developing other ART procedures and ensuring efficacy of existing procedures. In a recent report, the Institute of Medicine recommended that “Potential donors should be allowed to provide blastocysts for research only if they have decided to have those blastocysts discarded instead of donating them to another couple or storing them.” ^xiii Operating along this continuum seems to promote embryo donation (ED) as the primary alternative to destruction and if that is not acceptable, donation to research would be the next best alternative. This compromise approach preserves patient autonomy, individual belief systems, and choice while respecting the heightened value society has placed on embryos.

Donation to Others
Donation to others may provide an alternative for those who have completed their family. ED may be done out of altruism or even a camaraderie with others experiencing infertility. It may also be the option that best comports with personal views of the status of embryos. It is an option offered by 72% of 108 North American fertility centers responding to one survey.^xiv Only 37% of the clinics, however, actually performed ED.^xv A number of factors may account for the small number of programs performing ED including the fact that thinking about ED in the abstract while undergoing treatment is quite different than considering it once one has completed fertility treatment.^xvi

A number of potential barriers exist with respect to ED which must be overcome. Psychosocial barriers exist as a result of the potential genetic link to children raised by other families. Another barrier may be the language used to describe this process. Those who do not view embryos as persons may be deterred from using the services of the few highly publicized ED programs that describe embryos and the process in value-laden terms. For example, embryos have been referred to as “pre-born life;” thawing of embryos, referred to as “letting them die;” or the ED itself as a “life-honoring solution.” Clear, non-directive, factual information distributed to patients is one way to make this a more accessible option for patients.

A study published in 2001 indicated that, in Finland, where ED has been occurring since the early ’90s, about 18% of couples with embryos stored for 5 years or more donate some or all of their embryos to other couples.^xvii (This is significantly higher than what we have seen in the US, but suggests that some obstacles to ED can be overcome.) An Australian study found that for couples who have made a choice before and after treatment about disposition, only about 29% maintain this decision. This study also found that with only about 10% of couples donating their excess embryos, demand for ED far exceeds supply.

Conclusion
By respecting individual autonomy and choice in determining what to do with stored embryos people will make the choice that is best for them. This can best be accomplished through obtaining neutral information about all of the available options and not only considering this information before embryos are created but once again after completing a family or making the decision to end treatment.

i. Hoffman, et al., “Cryopreserved Embryos in the United States and Their Availability for Research,” 79(5) Fertility and Sterility 1063-1069 (2003).
ii. Id.
iii. Id.
iv. See, e.g. Del Zio v. Columbia Presbyterian Medical Center, No. 74-3558 (SDNY 1987), York v. Jones, 717 F. Supp. 421 (E.D. Va. 1989), and Davis v. Davis, 842 S.W.2d 588 (Tenn. 1992).
v. La. R.S. 9:129.
vi. West Virginia House Bill 2940 (2005).
vii. See, e.g. H. Jones and S. Crockin, “On Assisted Reproduction, Religion, and Civil Law,” 73 Fertility and Sterility (2000).
viii. Gabor Kovacs, Sue A. Breheny and Melinda J. Dear, “Embryo Donation at an Australian University In –Vitro Fertilization Clinic: Issues and Outcomes,” 178 MJA 127-129 (2003).
ix. Remarks by Father Tad Pacholcyzk of the National Catholic Bioethics Center at Illinois Math and Science Academy Lumen discussion, June 18, 2005.
x. ASRM Ethics Committee, “Disposition of Abandoned Embryos,” (July 1996).
xi. George Annas, et al., “The Politics of Human-Embryo Research: Avoiding the Ethical Gridlock,” 334 New Engl. J. Med. 1329-1332 (1996).
xii. News Conference on Stem Cell Research, Federal News Service May 25, 2005.
xiii. Id.
xiv. Sheryl A. Kingsberg, et al., “Embryo Donation Programs and Policies in North America: Survey Results and Implications for Health and Mental Health Professionals,” 73(2) Fertility and Sterility 215-220 (2000).
xv. Id.
xvi. See, e.g. Kimberly Elford, et al., “Research Implications of Embryo Cryopreservation Choices made by Patients Undergoing In Vitro Fertilization,” 81 (4) Fertility and Sterility 1154 -1155 (2004).
xvii. Soderstrom-Antilla, et al, “Embryo Donation: Outcome and Attitudes among Embryo Donors and Recipients,” 16 Human Reproduction 1120-1128 (2001).

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You have made the decision to form your family through adoption. Congratulations- now what do you do?

Your next step is to choose which adoption path you will follow. Over the recent weeks we have provides an overview of the various types of adoption; domestic agency or private, and international. Our plan is to drill down into each one of these adoption paths to help you determine which best suits you. Last month Aaron Britvan, Esq. gave us detailed information on private adoption-both in this newsletter and during an Online Education Session-you can view the transcript of that event at http://www.theafa.org/connections/chatschedule.html.

This article and our Online Education Session on January 17th will give you a step-by step roadmap to help you choose a domestic adoption agency.

• Step One: contact the Interstate Compact Office in your home state and get a list of adoption agencies that are licensed in your state. This can help narrow the search as it eliminates agencies your home state isn’t licensed to work with.

• Step Two: Develop your questions starting with basics; i.e. are there any age, martial, religious or sexual orientations requirements. You should also ask how many successful adoptions have been completed in the past year. If the race, ethnicity, or age of the child is an issue, ask then to specify how many of those completed adoptions met your criteria. Inevitably, we all want to know ‘how long” so don’t be shy to ask that question. You also need to know how the agency matches families to birth families-do the birth families chose or does the agency chose based on some set of criteria. Once you have your questions, you are ready to move on.

• Step Three: find an agency that ‘fits’ you. Call or visit the agencies that you are interested in or take advantage of conferences like the annual “Family Matters” Conference sponsored by The American Fertility Association and talk to agency representatives. Using a pre-determined set of questions with each agency will help you with each interview and the subsequent evaluation. It is an easy way to ‘level the playing field’. Keep interviewing agencies until you find one that is the best fit for you and your family.

• Step Four: Know the fee structure, both the agency’s fee as well as the fees you can expect to pay toward birth parent expenses. Most agencies divide their fees over the entire course of the adoption. Ask the agencies what they do with regard to their fee should a birth mother change her mind and decide not to complete the adoption. Generally the agency will not recharge you for their fee in this instance; your initial fee will be applied toward starting a new adoption

Remember, every state designates a time period between the birth of the child and the termination of the birth family’s parental rights. This is often an important piece of information in making informed choice about which agency to work with. This can tie into when you can take your child home, whether there will be a period of risk prior to the termination of rights, and other factors affecting your adoption.

Choosing an agency takes time and patience. Network with others who are in the process of adopting or have adopted, so you can find out as much as you can. Do the homework and, ultimately, trust your gut feelings: The agency you choose is going to be the conduit toward your child, and you want to feel secure about your choice.

Donnamarie Jones, LCSW, is a therapist at Westchester Jewish Community Services in Peekskill, NY, and does home studies and private adoption/infertility counseling. She can be reached at 845-896-3411.

Winter 2006 Adoption Series

ARE YOU CONSIDERING ADOPTION?
Find out whether adoption is the way to build your family by exploring the options, gathering the facts, and empowering yourself to make the choice that is right for you.
OUR FIVE SESSION SERIES INCLUDES:

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Free Teleconference Coaching Session

Topic: Infertility Support

Phone based tele-coaching groups provide a convenient way for you to take part in a supportive and educational group experience from the comfort of your home or work place. These groups meet for one hour via a phone bridgeline. A bridgeline allows all participants to hear and speak with each other via the telephone. No special phone is required. All groups are led by licensed mental health professionals with an expertise and often personal experience in infertility treatment and/or adoption.

Our group will meet on-line for two sessions (see dates below) and will focus on strategies for coping with family, friends, coworkers, and spouses. You will have opportunities to learn and share information as well as discuss emotional aspects of infertility. Receiving feedback from group participants will be helpful in understanding you’re not alone while you continue to deal with your losses and options.

For more information, please contact Emily Laitmon at 914-633-4224 or laitmon@aol.com.

Deadline for Registration: January 22, 2006

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Save the Date!

FAMILY MATTERS: THE FERTILITY AND ADOPTION CONFERENCE
Sunday, May 7, 2006, 7:00 am - 5:45 pm, The New York Grand Hyatt Hotel

Family Matters is the largest annual U.S. fertility and adoption educational event, featuring over 45 workshops, 90 world-renowned speakers and over 60 exhibitors. To register or for more information, please visit www.theAFA.org/events.

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Online Education Session Schedule — January & February 2006