Adopting genetics: motivations and outcomes of personal genomic testing in adult adoptees

被引:35
作者
Baptista, Natalie M. [1 ,2 ]
Christensen, Kurt D. [1 ]
Carere, Deanna Alexis [1 ,3 ]
Broadley, Simon A. [2 ]
Roberts, J. Scott [4 ]
Green, Robert C. [1 ,5 ,6 ,7 ]
机构
[1] Brigham & Womens Hosp, Dept Med, Div Genet, 75 Francis St, Boston, MA 02115 USA
[2] Griffith Univ, Sch Med, Gold Coast Campus, Qld, Australia
[3] Harvard TH Chan Sch Publ Hlth, Program Genet Epidemiol & Stat Genet, Boston, MA USA
[4] Univ Michigan, Dept Hlth Behav & Hlth Educ, Sch Publ Hlth, Ann Arbor, MI USA
[5] Harvard Med Sch, Boston, MA 02115 USA
[6] Partners Personalized Med, Boston, MA 02115 USA
[7] Broad Inst, Boston, MA 02115 USA
基金
加拿大健康研究院; 美国国家卫生研究院;
关键词
adult adoptee; adoption; direct-to-consumer genetic testing; family history; personal genomic testing; FAMILY-HISTORY; CUSTOMERS; HEALTH; IMPACT; DISORDERS; SERVICES; VALIDITY;
D O I
10.1038/gim.2015.192
中图分类号
Q3 [遗传学];
学科分类号
071007 ; 090102 ;
摘要
Purpose: American adult adoptees may possess limited information about their biological families and turn to direct-to-consumer personal genomic testing (PGT) for genealogical and medical Information. We investigated the motivations and outcomes of adoptees undergoing PGT using data from the Impact of Personal Genomics (PGen) Study. Methods: The PGen Study surveyed new 23andMe and Pathway Genomics customers before and 6 months after receiving PGT results. Exploratory analyses compared adoptees' and nonadoptees' PGT attitudes, expectations, and experiences. We evaluated the association of adoption status with motivations for testing and postdisclosure actions using logistic regression models. Results:. Of 1,607 participants, 80 (5%) were adopted. As compared with nonadoptees, adoptees were mote likely to cite limited knowledge of family health history (OR = 10.1; 95% CI = 5.7-19.5) and the opportunity to learn genetic disease risks (OR = 2.7; 95% CI = 1.6-4.8) as strong motivations for PGT. Of 922 participants who completed 6-month follow-up, there was no significant association between adoption status and PGT-motivated health-care utilization or health-behavior change. Conclusion: PGT allows adoptees to gain otherwise inaccessible information about their genetic disease risks and ancestry, helping them to fill the void of an incomplete family health history.
引用
收藏
页码:924 / 932
页数:9
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