The Key Features of a Genetic Nondiscrimination Policy
Authors: Diya Uberoi, Gratien Dalpé, Katherine Cheung, Emma Kondrup, Nicole Palmour, Thalia Arawi, Mykhailo Arych, Miguel A. Ramiro Aviles, Carmen Ayuso, Heidi B. Bentzen, Katherine Blizinsky, Yvonne Bombard, Subhashini Chandrasekharan, Brian Hon Yin Chung, Aisling de Paor, Megan Doerr, Edward S. Dove, Charles Dupras, Palmira Granados-Moreno, Dov Greenbaum, Hrefna D. Gunnarsdóttir, Hazar Haidar, Chih-hsing Ho, Saumya S. Jamuar, Hannah Kim, Audrey Lebret, Angus Macdonald, Timo Minssen, Jamal Nasir, Dianne Nicol, Pilar Nicolás, Margaret Otlowski, Athira P. S. Nair, Anya E. R. Prince, Mark Rothstein, Rosalyn Ryan, Guillaume Sillon, Kshitij K. Singh, Ian Stedman, Jane Tiller, Ine Van Hoyweghen, Ma’n H. Zawati, Yann Joly
Journal: JAMA Network Open (2024)

Importance Governments worldwide have become increasingly cognizant of the spread of genetic discrimination (negative treatment or harm on the basis of actual or presumed genetic characteristics). Despite efforts by a number of governments to establish regulations addressing this phenomenon, public concern about genetic discrimination persists. Objective To identify key elements of an optimal genetic nondiscrimination policy and inform policymakers as they seek to allay genetic nondiscrimination and related public anxieties. Evidence Review Sixty multidisciplinary experts from 20 jurisdictions worldwide were consulted to understand their views on effective genetic nondiscrimination policies. Following standard requirements of the Delphi method, 3 rounds of surveys over the course of 1.5 years were conducted. Round 1 focused on assessing participants’ understanding of the intricacies of existing genetic nondiscrimination policies, while rounds 2 and 3 invited participants to reflect on specific means of implementing a more effective regime. A total of 60 respondents participated in the first round, 53 participated in round 2, and 43 participated in round 3. Findings While responses varied across disciplines, there was consensus that binding regulations that reach across various sectors are most useful in preventing genetic discrimination. Overall, experts agreed that human rights–based approaches are well suited to preventing genetic discrimination. Experts also agreed that explicit prohibition of genetic discrimination within nondiscrimination policies can highlight the importance of genetic nondiscrimination as a fundamental right and ensure robust protection at a national level. While most participants believed the international harmonization of genetic nondiscrimination laws would facilitate data sharing worldwide, they also recognized that regulations must reflect the sociocultural differences that exist among regions. Conclusions and Relevance As the reach of genetic discrimination continues to evolve alongside developments in genomics, strategic policy responses that are harmonious at the international and state levels will be critical to address this phenomenon. In seeking to establish comprehensive frameworks, policymakers will need to be mindful of regional and local circumstances that influence the need for and efficacy of unique genetic nondiscrimination approaches across diverse contexts.