Post-conception Contact among Gamete Donation Participants Jean Benward, L.C.S.W. Counseling Offices of Jean Benward San Ramon, CA 1

LEARNING OBJECTIVES At the conclusion of this presentation, participants should be able to: 1. Discuss the meaning of the genetic link for participants in gamete donation who seek contact. Describe the dilemmas posed by contact among the donor-conceived, their parents, donors, and genetic siblings. 3. Identify the counseling implications for participants in gamete donation.

DISCLOSURE Nothing to disclose

CURRENT STATUS Wide range of policies in gamete donation about openness Amount of information shared about donors Arrangements for mutual consent contact Identifiable donors While programs debate policies Participants in donor conception are searching for genetic relatives Donor-conceived are looking for their donors Parents of donor-conceived children are looking for ‘siblings’ Donors are making themselves available for contact Freeman 2009; Beeson 2011; Cushing 2010; Jadva 2009; Ravitsky 2010; Johnson 2011

THE GENETIC CONNECTION IN GAMETE DONATION We have an uneasy relationship with the genetic connection in gamete donation A new form of family building Daniels 2002 and/or A re-creation of the traditional model of kinship Carsten 1998 If the genetic tie had no significance there would be no need to hide it in assisted conception. Grace et al., 2008; Braverman 2010

A DUAL IDENTITY During its life cycle The donor-assisted family exists in a psychological space where there is tension between genes and relationships. Harrington 2008; Grace 2008 Different family members ascribe different meanings to genes and relationships. Kirkman 2004 The meanings can change over time. Kirkman 2004

GENETIC LINKS HAVE MEANING Genetic links have psychological and social meaning The traditional family construct The very definition of kinship New medical focus on “genes” Cultural importance placed on genealogy Represents continuity and connectedness Family resemblance talk The value that is given to physical likeness in families Becker 2005; Grace et al., 2008; Harrington et al., 2008; Ravitsky 2010; Sawyer 2009

BELIEFS Looking for genetic relatives rests on idea that: Genealogical knowledge is important to a sense of identity. Ravitsky 2010; Benward et al., 2009 Genetic links represent “powerful knowledge.” Hargreaves, Collard Links and knowledge do not undermine the family unit Grace 2008 The nuclear family is not the only legitimate form of kinship. Hertz, Mattes 2011; Levine 2008; Collard 2011

CONSTRUCTING RELATEDNESS Donor-linked relations do not fit neatly into the Euro- American understanding of kinship relationships. New and complicated genealogy/family tree Donor-linked families create new kinship links By necessity these links and relationships are fluid Links reflect a larger dialogue about biogenetic connections Create novel family forms Levine 2008; Hertz 2011; Hargreaves 2006; Harrington 2008

INFORMATION SHARING Donors provide a great deal of information about themselves, including photos, videos and audio tapes. Amount of information makes them more identifiable and easier to find Braverman 2010 How easy is it to find a donor? VERY EASY! What if a donor still wants to provide the information?

HOW EXACTLY DO SEARCHERS FIND DONORS? Internet Photos, facial recognition software Mutual consent websites DNA testing Examples of donors who were found

DNA AND GENEALOGY DATABASES Family TreeDNA: The donor-conceived project DNA Ancestry Project Ancestor.com Dna.ancestry.com Dna-testing-advisor.com Advises adoptees how to search 23andme.com

ETHICAL OBLIGATIONS TO DONORS? Can we give donors their donor identification number if they seek mutual consent contact? Some banks refuse to give it to donor Can we tell donors how many offspring they have? Many programs refuse to given even approximate number to donors Counseling about identifiability We can no longer guarantee anonymity for donors Braverman 2010

ETHICAL QUESTIONS RAISED Can we inform parents and offspring of the number of donor’s genetic offspring? Is it ethical to seek consent for contact from previously anonymous donors? Do we have an ethical obligation to help those who seek information and contact? If so, what might that look like?

VIDEO CLIPS: THE STORY OF DONOR 150 AND HIS OFFSPRING New York Times chronicles story of donor siblings who met online through the Donor Sibling Registry. Their mothers used Cal Cryo Donor 150. Donor reads story and the donor comes forward. Several offspring and donor meet in Venice Beach, CA. McGrath 2011

WHAT CONSITUTES GOOD PRACTICE? American Society for Reproductive Medicine “Programs may consider sharing with … offspring … l8 years of age the information that would be available to the recipient parents about the donor.” “It is advisable to …. to store identifying information in case all parties later agree to some form of identifying disclosure.” ASRM 2012 Questions raised by this: Limits on number of offspring per donor Sawyer 2009 Do we really value its importance? Benward et al 2009

IMPLICATIONS Counseling donors and recipients about offspring interest in the donor and potential for seeking out donor Counseling donors about identifiability Policies to encourage or support information sharing Addressing obstacles to information sharing and mutual consent contact