Consensus Project on Best Practices and Appropriate Uses of Genetic Testing for Adopted Persons
On Nov. 3-4, 2021, a multidisciplinary consortium of eminent scholars from the fields of bioethics clinical genetics, adoption psychology, health law, pediatric medicine, genetic counseling, and adoptee advocacy organizations convened to identify where interdisciplinary consensus exists on several major topical areas concerning the use of genetic testing to fill gaps in family health history for adopted persons, and to recommend best practices in these areas.
The meeting began with background presentations by eminent scholars from a variety of disciplines, offering a description of the present state of the field in key areas pertinent to all topical sub-working groups. These background presentations were recorded and can be viewed here:
This consortium discussed consensus findings in the following areas:
Needs and Capabilities for Genetic screening
Inherited disease needs for Adoptees; What we can reliably test for? Should results be limited to those with high actionability? How important are ancestry results for interpretation of other inherited dis-ease results? Does Newborn Screening make genetic testing unnecessary for childhood onset conditions (allowing us to wait until the adoptee is an adult to fill inherited disease informational gaps?). What is the ideal age for Genetic Testing designed to fill gaps in Family Health History for use in health screening and maintenance?
Sub-group lead: Marsha Michie
Members: Dana Johnson, Aaron Goldenberg, Lainie Ross, Bruce Korf, Lori Orlando, Mike Farrell, Robert Currier, Devin Absher, David Bick
Informed Consent, Return of Results, and Genetic Counseling
Are there special genetic counseling needs for adoptees or adoptive parents seeking genetic testing? How does an adopted person’s “adoption journey” surrounding self-identity affect how genetic testing results are returned? Are there particular purposes for which genetic testing might be sought by adoptees that are particularly concerning? Where should the child’s views come into play, and at what age?
Sub-group lead: Kelly East,
Members: Julie Harris Wai, Hollee McGinnis, Malia Fullerton; Jean McEwen, Heewon Lee, Cinnamon Bloss, Samantha Wilson, Brianne Kirkpatrick
Ancestry Testing, Relative Matching, and Privacy
How do we balance the rights of adoptees to health (inherited disease) and ancestry information with the privacy rights of biological parents who may wish to remain anonymous? How should the privacy interests of adoptive parents be balanced with those of their child? What are the key risks for adoptees who are being placed in a data repository or relative matching database (e.g., increased susceptibility to oppressive law enforcement tactics or other forms of discrimination)? What are the best ways to reduce these risks?
Sub-group lead: Maya Sabatello,
Members: Rich Lee, Greg Barsh; Amy McGuire, Rich Sharp, Danielle Dick, Lisa Gibson, Alison La Pean Kirschner; Susan Wolf
Economic and Social Obstacles
Given the potential to “stigmatize” and inhibit adoption for certain children, should genetic testing be allowed pre-adoption (to avoid a couple adopting a child they cannot afford in terms of associated health costs?). Or should genetic testing be restricted to post-adoption circumstances?
Sub-group lead: Mark Aulisio
Members: Anya Prince, Jana Craig, Ryan Hanlon, Barbara Koenig, Neil Lamb, Darrell Ezrell, Kaija Zusevics, Crystal Smith