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Genetic Research and the Law

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Stroke Genetics

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Abstract

Scientists conduct genetic research to find ways to prevent and to cure diseases caused by genetic predispositions. It is critically important that the research be conducted in a way that protects the privacy of the participants. The main way to achieve that goal is to take steps to ensure that no one discloses confidential genetic information. That task is made more difficult by the fact that researchers are turning to electronic databases to keep up with the massive amount of information they have to decipher. Privacy laws were put in place at a time when most medical information was kept on paper. In fact, numerous health care providers still keep their medical records in paper form. Unfortunately, privacy laws have not kept pace with the ingenuity of persons seeking to steal sensitive health information. Genetic privacy is crucial because if a person’s genetic information ends up in the wrong hands he or she may be the subject of genetic discrimination. Most genetic discrimination occurs in health and employment settings, the two places were persons are the most vulnerable. Congress has enacted statutes to protect people from being discriminated against because of their genetic predispositions. Nonetheless, the laws contain loopholes and weak enforcement mechanisms. In a profit-driven world, it is not surprising that there is now a market for genetic information and genetic materials. The law makes it clear that a person cannot sell a kidney or a liver; however, that person can sell blood or sperm. It is too early to tell whether genetic material will be treated like the former or the latter. But, we do know that as long as private companies are involved in genetic research commercialization will continue to occur.

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References

  1. Pate v. Threlkel, 661 So. 2d 278 (Fla. 1995).

    Google Scholar 

  2. Safer v. Estate of Pack, 677 A.2d 1188 (N.J. App. 1996).

    Google Scholar 

  3. Andrasz LJ. HIPAA and electronic medical records: benefits and security issues. DCBA Brief. 2012;25:26, 27.

    Google Scholar 

  4. Turk M. Electronic health records: how to suture the gap between privacy and efficient delivery of healthcare. Brook L Re. 2015;80:565.

    Google Scholar 

  5. Kreaser K. The adoption of electronic health records: benefits and challenges. Ann Health L. 2007;16(317–319)

    Google Scholar 

  6. Miller SJ. Electronic medical records: how the potential misuse outweighs the benefits of transferability. J Health Biomed L. 2008;4:353.

    Google Scholar 

  7. Sokol AJ, Molzen CJ. The changing standard of care in medicine: E-health, medical errors, and technology add new obstacles. J Legal Med. 2002;23:449. 461–62

    Article  Google Scholar 

  8. Patterson PD. Healing health care: fixing a broken system with information technology. Fall Kan LJ Pub Pol’y. 2004;14:193–200.

    Google Scholar 

  9. Bregman-Eschet Y. Genetic databases and biobanks: who controls our genetic privacy? 23 Santa Clara Comput High Technol L J. 2006;1(5)

    Google Scholar 

  10. Jacques LB. Electronic health records and respect for patient privacy: a prescription for compatibility. Vand J Ent Tech L. 2011;13:441, 443.

    Google Scholar 

  11. Swire SP. Peeping. Berkeley Tech L J. 2009;24:1167, 1170–1.

    Google Scholar 

  12. Wilka C. The effects of Clapper v. Amnesty International USA: an improper tightening of the requirement for Article III standing in medical data breach litigation. Creighton L Rev. 2016;46(467467–68)

    Google Scholar 

  13. Sullivan SM. But doctor, i still have both feet: remedial problems faced by victims of medical identity theft. Am J L Med. 2009;35:647.

    Google Scholar 

  14. Gering SR. Electronic health records: how to avoid digital disaster. Mich St U J Med L. 2012;16:297.

    Google Scholar 

  15. McLaughlin RA. HIPAA, the privacy rule and their implications under the longshore and harbor workers compensation act. Loy Mar L J. 2013;12:24, 27–8.

    Google Scholar 

  16. Rich RF, Ziegler J. Genetic discrimination in health insurance: comprehensive legal solutions for a (not so) special problem? Ind Health L Rev. 2005;2:5, 7.

    Google Scholar 

  17. Gerberry RA. Legal ramifications of the formation of digital hospitals. Health Law. 2002;14(2):27, 29.

    Google Scholar 

  18. Tovino SA Silence is Golden...except in health care philanthropy. U U Rich L Rev 48, 1157, 1163 (2014).

    Google Scholar 

  19. Brown B. Those organizations must sign business associate agreements to deal with medical records and that may bring them under the preview of HIPAA. The number of online personal health records is growing, but is the data in these records adequately protected. J Health Care Compliance. 2007;9(3):36.

    Google Scholar 

  20. Rothstein MA. Biobanks are repositories of human biological material collected for biomedical research. Expanding the ethical analysis of biobanks. J L Med Ethics. 2005;33:89.

    Article  Google Scholar 

  21. Piehl MJ. The brave new world of genetic biobanks: international lessons for a potential United States Biobank. Val U L Rev. 2011;46:69, 70.

    Google Scholar 

  22. Jarsson RJ. Researcher liability for negligence in human subject research: informed consent and researcher malpractice claims. Wash L Rev. 2003;78:229, 230.

    Google Scholar 

  23. Foster A. Critical dilemmas in genetic testing: why regulations to protect confidentiality of genetic information should be expanded. Baylor L Rev. 2010;62(537545)

    Google Scholar 

  24. Jungreis R. Fearing fear itself: the proposed genetic information nondiscrimination act of 2005 and public fears about genetic information. J L Pol’y. 2007;15(211218-18)

    Google Scholar 

  25. U.S. 200 (1927).

    Google Scholar 

  26. Id. at 207.

    Google Scholar 

  27. Lombardo PA. Three generations, no imbeciles: new light on Buck v. Bell. N Y U L Rev. 1985;60:3054.

    Google Scholar 

  28. U.S. at 205-06.

    Google Scholar 

  29. Id. at 208.

    Google Scholar 

  30. Id. at 205.

    Google Scholar 

  31. Kundnani R. Protecting the right to procreate for mentally ill women. S Cal Rev L Soc Just. 2013;23(59–64)

    Google Scholar 

  32. Vacchio PK, Wolinsky JL. Genetic information nondiscrimination act of 2008: it’s in the title VII’s genes. Hofstra Lab Emp L J. 2011;29:229, 232.

    Google Scholar 

  33. Bowman JE. Genetics and African Americans. Seton Hall L Rev. 1997;27:919, 920.

    Google Scholar 

  34. Shin JL. Closing the gap: protecting predictive neuroscience information from health insurance discrimination. Emory L J. 2015;64:14331444.

    Google Scholar 

  35. Pendo E. Race, sex, and genes at work: uncovering lesson of worman-bloodsaw. Hous J Health L Pol’y. 2010;10(227, 252)

    Google Scholar 

  36. Ajunwa I. Genetic data and civil rights. Harv C R C L L Rev. 2016;51:75, 91–2.

    Google Scholar 

  37. Roberts JL. Preempting discrimination: lessons from the genetics nondiscrimination act. Vand L Rev. 2010;63:439451.

    Google Scholar 

  38. Slaughter L. Genetic information non-discrimination act. Harv. J Legis. 2013;50:41,58–9.

    Google Scholar 

  39. Gatter R. Walking the talk of trust in human subjects research: the challenge of regulating financial conflicts of interest. Emory L J. 2003;52:237, 329–30.

    Google Scholar 

  40. Jobinson JMA. “Myriad” of controversy over the question of human gene patent eligibility: a comparison of the differing approaches in the United States and Australia. Hous J Int’l L. 2016;38:913917–9.

    Google Scholar 

  41. P.2d 479 (Cal. 1990)

    Google Scholar 

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Authors and Affiliations

  1. Center for Health Law and Policy, Domestic L.L.M. Program, Cleveland State University, Cleveland, OH, USA

    Browne C. Lewis Esq., M.P.A., J.D., L.L.M. (Leon and Gloria Plevin Professor of Law)

Authors
  1. Browne C. Lewis Esq., M.P.A., J.D., L.L.M.
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Correspondence to Browne C. Lewis Esq., M.P.A., J.D., L.L.M. .

Editor information

Editors and Affiliations

  1. Department of Neurology, Institute of Cardiovascular Research Royal Holloway College, University of London Imperial College London Healthcare NHS Trust, London, United Kingdom

    Pankaj Sharma

  2. Department of Neurology, Mayo Clinic, Jacksonville, Florida, USA

    James F. Meschia

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Lewis, B.C. (2017). Genetic Research and the Law. In: Sharma, P., Meschia, J. (eds) Stroke Genetics. Springer, Cham. https://doi.org/10.1007/978-3-319-56210-0_18

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  • DOI: https://doi.org/10.1007/978-3-319-56210-0_18

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  • Publisher Name: Springer, Cham

  • Print ISBN: 978-3-319-56208-7

  • Online ISBN: 978-3-319-56210-0

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