Abstract
Whether the integration of genetic/omic technologies in sports contexts will facilitate player success, promote player safety, or spur genetic discrimination depends largely upon the game rules established by those currently designing genomic sports medicine programs. The integration has already begun, but there is not yet a playbook for best practices. Thus far discussions have focused largely on whether the integration would occur and how to prevent the integration from occurring, rather than how it could occur in such a way that maximizes benefits, minimizes risks, and avoids the exacerbation of racial disparities. Previous empirical research has identified members of the personal genomics industry offering sports-related DNA tests, and previous legal research has explored the impact of collective bargaining in professional sports as it relates to the employment protections of the Genetic Information Nondiscrimination Act (GINA). Building upon that research and upon participant observations with specific sports-related DNA tests purchased from four direct-to-consumer companies in 2011 and broader personal genomics (PGx) services, this anthropological, legal, and ethical (ALE) discussion highlights fundamental issues that must be addressed by those developing personal genomic sports medicine programs, either independently or through collaborations with commercial providers. For example, the vulnerability of student-athletes creates a number of issues that require careful, deliberate consideration. More broadly, however, this ALE discussion highlights potential sports-related implications (that ultimately might mitigate or, conversely, exacerbate racial disparities among athletes) of whole exome/genome sequencing conducted by biomedical researchers and clinicians for non-sports purposes. For example, the possibility that exome/genome sequencing of individuals who are considered to be non-patients, asymptomatic, normal, etc. will reveal the presence of variants of unknown significance in any one of the genes associated with hypertrophic cardiomyopathy (HCM), long QT syndrome (LQTS), Marfan’s syndrome, and other conditions is not inconsequential, and how this information is reported, interpreted, and used may ultimately prevent the individual from participation in competitive sports. Due to the distribution of genetic diversity that reflects our evolutionary and demographic history (including the discernible effects of restricted gene flow and genetic drift associated with cultural constructs of race) and in recognition of previous policies for “leveling” the playing field in competitive sports based on “natural” athletic abilities, preliminary recommendations are provided to discourage genetic segregation of sports and to develop best practice guidelines for genomic sports medicine programs that will facilitate player success, promote player safety, and avoid genetic discrimination within and beyond the program.
Highlights
In March 2013 the American College of Medical Genetics and Genomics (ACMG) and the American Academy of Pediatrics (AAP) announced a policy statement on genetic testing and screening of children (Ross et al, 2013)
The need for genetic counseling was highlighted, in the context of predictive testing, with the AAP and ACMG noting that such counseling is “essential to ensure that parents, guardians, and maturing minors fully understand the limits of genetic knowledge and treatment capabilities as well as the potential for psychological harm, stigmatization, and discrimination.”
To ensure (1) respect for autonomy of the student-athletes, (2) optimization of the risks and benefits, and (3) promotion of justice among student-athletes, recognition of these vulnerabilities suggests heightened care be exercised when developing a program incorporating PGx technologies. These vulnerabilities of student-athletes highlight potential reasons why a DTC market will and should continue to exist, as individuals interested in sports should have a means to access their own PGx information without other actors automatically and/or simultaneously gaining unfettered access to those data
Summary
In March 2013 the American College of Medical Genetics and Genomics (ACMG) and the American Academy of Pediatrics (AAP) announced a policy statement on genetic testing and screening of children (Ross et al, 2013). These PGx services include and sometimes focus on traits and conditions relevant to sports (Wagner, 2013; Wagner & Royal, 2012; JK Wagner and CD Royal, unpublished data), allowing individual athletes to access information (a) without coordination with a school, team, or perhaps even parents and (b) outside of the formal and potentially intimidating context of medical care, scientific research, and pre-participation screening processes.
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