Literature DB >> 35216680

Family secrets: Experiences and outcomes of participating in direct-to-consumer genetic relative-finder services.

Christi J Guerrini1, Jill O Robinson2, Cinnamon C Bloss3, Whitney Bash Brooks2, Stephanie M Fullerton4, Brianne Kirkpatrick5, Sandra Soo-Jin Lee6, Mary Majumder2, Stacey Pereira2, Olivia Schuman2, Amy L McGuire2.   

Abstract

In recent decades, genetic genealogy has become popular as a result of direct-to-consumer (DTC) genetic testing. Some DTC genetic testing companies offer genetic relative-finder (GRF) services that compare the DNA of consenting participants to identify genetic relatives among them and provide each participant a list of their relative matches. We surveyed a convenience sample of GRF service participants to understand the prevalence of discoveries and associated experiences. Almost half (46%) of the 23,196 respondents had participated in GRF services only for non-specific reasons that included interest in building family trees and general curiosity. However, most (82%) also learned the identity of at least one genetic relative. Separately, most respondents (61%) reported learning something new about themselves or their relatives, including potentially disruptive information such as that a person they believed to be their biological parent is in fact not or that they have a sibling they had not known about. Respondents generally reported that discovering this new information had a neutral or positive impact on their lives, and most had low regret regarding their decision to participate in GRF services. Yet some reported making life changes as a result of their discoveries. Compared to respondents making other types of discoveries, those who learned that they were donor conceived reported the highest decisional regret and represented the largest proportion reporting net-negative consequences for themselves. Our findings indicate that discoveries from GRF services may be common and that the consequences for individuals, while generally positive, can be far-reaching and complex.
Copyright © 2022 American Society of Human Genetics. Published by Elsevier Inc. All rights reserved.

Entities:  

Keywords:  adoption; ancestry; direct-to-consumer genetic testing; donor conception; family secrets; misattributed parentage; non-paternity event; relative matching

Mesh:

Year:  2022        PMID: 35216680      PMCID: PMC8948156          DOI: 10.1016/j.ajhg.2022.01.013

Source DB:  PubMed          Journal:  Am J Hum Genet        ISSN: 0002-9297            Impact factor:   11.043


  23 in total

1.  The changing face of "misidentified paternity".

Authors:  Dena S Davis
Journal:  J Med Philos       Date:  2007 Jul-Aug

2.  Attitudes on DNA ancestry tests.

Authors:  Jennifer K Wagner; Kenneth M Weiss
Journal:  Hum Genet       Date:  2011-06-23       Impact factor: 4.132

3.  Effect of direct-to-consumer genomewide profiling to assess disease risk.

Authors:  Cinnamon S Bloss; Nicholas J Schork; Eric J Topol
Journal:  N Engl J Med       Date:  2011-01-12       Impact factor: 91.245

4.  Direct-to-Consumer Genetic Testing: User Motivations, Decision Making, and Perceived Utility of Results.

Authors:  J Scott Roberts; Michele C Gornick; Deanna Alexis Carere; Wendy R Uhlmann; Mack T Ruffin; Robert C Green
Journal:  Public Health Genomics       Date:  2017-01-10       Impact factor: 2.000

5.  Impacts of personal DNA ancestry testing.

Authors:  Caryn Kseniya Rubanovich; Riley Taitingfong; Cynthia Triplett; Ondrej Libiger; Nicholas J Schork; Jennifer K Wagner; Cinnamon S Bloss
Journal:  J Community Genet       Date:  2020-08-13

6.  Direct-to-consumer DNA testing: the fallout for individuals and their families unexpectedly learning of their donor conception origins.

Authors:  Marilyn Crawshaw
Journal:  Hum Fertil (Camb)       Date:  2017-07-11       Impact factor: 2.767

7.  Expectations and experiences of gamete donors and donor-conceived adults searching for genetic relatives using DNA linking through a voluntary register.

Authors:  O B A van den Akker; M A Crawshaw; E D Blyth; L J Frith
Journal:  Hum Reprod       Date:  2014-10-29       Impact factor: 6.918

8.  Experiences of offspring searching for and contacting their donor siblings and donor.

Authors:  Vasanti Jadva; Tabitha Freeman; Wendy Kramer; Susan Golombok
Journal:  Reprod Biomed Online       Date:  2010-01-11       Impact factor: 3.828

Review 9.  Extent and Predictors of Decision Regret about Health Care Decisions: A Systematic Review.

Authors:  Maria Margarita Becerra Pérez; Matthew Menear; Jamie C Brehaut; France Légaré
Journal:  Med Decis Making       Date:  2016-03-14       Impact factor: 2.583

10.  The end of donor anonymity: how genetic testing is likely to drive anonymous gamete donation out of business.

Authors:  Joyce C Harper; Debbie Kennett; Dan Reisel
Journal:  Hum Reprod       Date:  2016-04-12       Impact factor: 6.918

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