School of Public Policy Capstones


Ken Lefebvre

Publication Date



In the last several years, genetic sequencing technologies have become widely accessible to consumers as prices have fallen at rates faster than the National Institute of Health had initially predicted. With these lower costs more patients now have access to their own genetic information than ever before, thanks to a host of new services.

Though objective in itself, genetic information is often regarded as an indicator of social and medical outcomes, with some associations substantiated and others largely reflecting social attitudes. Our understanding of genetic markers as forecasters for certain physiological disorders is still relatively limited, but associations between certain genes and certain outcomes, however scientifically valid, hold the potential to yield disparate treatment through this new facet of human diversity. There is some concern that this growing library of information is portentous to discrimination in employment and insurance coverage based on these genetic differences; for this reason lawmakers have attempted to alleviate fears of such socially deterministic practices. The Genetic Indiscrimination Act of 2008 (GINA) amends much of these privacy concerns through a series of far-reaching legal protections, however lacunae remain both in the law's language and the inherent traceability of genetic information itself.

In this report the author will attempt to address why GINA and its counterparts came into being, what kinds of protections they offer, and where they might be improved to benefit the individuals they were written to protect. Some states have attempted to expand on Federal law to address life, long term care, and disability insurance, however the absence of a current authoritative source on the statues of all 50 states may hinder the ability of patients to utilize these additional protections. The author also found that some privacy risks may exist in the public disclosure of genomes by a patient's relatives, as genetic technology may allow this information to be used to identify themselves and others whose genomes are listed anonymously in medical databases. Since an individual's genetic information may reveal traits present in other family members, this paper also discusses current GINA/HIPAA disclosure policies, and their shortcomings in providing the genomic information of one patient to others who may medically benefit from this knowledge.

This report concludes that there are some immediate steps that lawmakers and medical professionals could take to better protect individuals from discriminatory practices--largely through education and the expansion of Federal law to cover other forms of insurance. Several other issues addressed here may not be resolved through immediate changes in policy, but may end up being reconciled in court in the ensuing years. In addressing these issues, this paper attempts to evince how discourse among policymakers, scientists, and ethicists has influenced genetic discourse policy, what this means for current law, and how this may affect future legal outcomes.