Abstract
The Genetic Information Nondiscrimination Act (GINA) was intended to protect individuals in the USA from discrimination based on their genetic data, but does not apply to life, long-term care or disability insurance. Patient advocates and ethicists have argued that GINA does not go far enough. Others express concerns for the viability of insurance companies if millions of potential customers know more than professional actuaries. Here we discuss the exclusion of certain insurance types from GINA. We explore the ethical and economic implications of this distinction, and potential paths forward. We suggest that because long-term care and disability insurance can be essential for well-being, there is no good reason to place them in a class with life insurance and therefore beyond GINA's reach.
Papers of special note have been highlighted as: • of interest; •• of considerable interest
References
- 1 . An altered treatment plan based on direct to consumer (DTC) genetic testing: personalized medicine from the patient/pin-cushion perspective. J. Pers. Med. 2(4), 192–200 (2012). • Gives a real-life example of the uncertainty of significance of genetic data in the dynamic landscape of guidelines for genomic medicine.
- 2 Collins F. NIH head Francis Collins on new efforts to use medical records of volunteers to treat diseases. The Diane Rehm Show (2015). http://thedianerehmshow.org/shows/2015-09-28/nih-head-francis-collins-on-new-efforts-to-use-medical-records-of-volunteers-to-treat-diseases.
- 3 US Congress. The Genetic Information Nondiscrimination Act of 2008 (2008). www.eeoc.gov/laws/statutes/gina.cfm.
- 4 . Healthcare access as a right, not a privilege: a construct of Western thought. Philos. Ethics. Humanit. Med. 2(1), 2 (2007). •• This piece puts forth a key underlying tenet of our argument, that human beings have a fundamental.
- 5 . Is health care a right? Health reforms in the USA and their impact upon the concept of care. Ann. Med. Surg. (Lond). 2(1), 15–17 (2013).
- 6 . Two cheers for GINA? Genome Med. 1(1), 6 (2009).
- 7 . Who will pay for long term care? In: Long Term Care: Definition, Demand, Cost, And Financing. Health Administration Press, Chicago, IL, USA, 3–31 (2001).
- 8 . Measurement of disability-free survival after surgery. Anesthesiology 122(3), 524–536 (2015).
- 9 . Why most published research findings are false. Chance 18(4), 40–47 (2005).
- 10 California Insurance Code 2.5 (2011). http://law.justia.com/codes/california/2011/ins/division-2/10140-10145.4/.
- 11 Public awareness of genetic nondiscrimination laws in four states and perceived importance of life insurance protections. J. Genet. Couns. 24(3), 512–521 (2015).
- 12 . Ethics, Medicine, and Information Technology: Intelligent Machines and the Transformation of Health Care. Cambridge University Press, Cambridge, UK (2015).
- 13 US Congress. American Recovery and Reinvestment Act of 2009 (2009). www.congress.gov/bill/111th-congress/house-bill/1/text.
- 14 . Compelled authorizations for disclosure of health records: magnitude and implications. Am. J. Bioeth. 7(3), 38–45 (2007).
- 15 . New directions for health insurance design: implications for public health policy and practice. J. Law Med. Ethics 31(Suppl. 4), 94–103 (2003).
