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