Genetic Testing Privacy Dna

Scientific understanding of the human genome has led to the availability of genetic tests for ancestry, forensic evidence and health information. Genetic testing has brought many benefits to society, including:

  • determining paternity

  • helping people find out if they are related to one another

  • identifying genetically inherited diseases and risks

  • identifying criminals

  • prenatal genetic testing to identify hereditary conditions

  • proving a crime suspect ‘s innocence

  • tracing ancestry and ethnic origin.

Everyone has a unique DNA footprint, and our genetic information tells a great deal about us. Because genetic fingerprinting is so revealing, some people worry about the privacy of our DNA.

Luckily, many laws already exist to protect the privacy of DNA records. As genetic testing continues to develop, public awareness and concern keep regulations evolving to provide better DNA privacy protection as time goes by.

The Fourth Amendment and DNA Privacy

In the United States, the fourth amendment of the constitution protects us against unreasonable searches and seizures. The seizure of blood, or any other physical intrusion that involves penetration under the skin, is included in this amendment.

Your DNA privacy is protected by the fourth amendment. Unless you are suspected of a crime, you can not be forced to provide a DNA sample.

Genetic Information Nondiscrimination Act (GINA)

To further protect American employee privacy rights and our genetic information, President Bush signed the Genetic Information Nondiscrimination Act (GINA) into effect on May 21, 2008. This measure, which was debated in Congress for 13 years, protects Americans against discrimination based on their genetic profiles in the areas of employment and health insurance.

Standards for Privacy of Individually Identifiable Health Information

Another important protection for the privacy of our medical information was adopted in April of 2001 by the Department of Health and Human Services. These Standards for Privacy of Individually Identifiable Health Information were required by the Health Insurance Portability and Accountability Act of 1996 (HIPAA) to take effect by 2003 (or 2004 for small health plans). This act requires the health insurance industry to give patients more control over their medical information, and protects our privacy.

State Laws

In American the privacy of our medical records is protected to some degree in all 50 states. So far, 29 states have added specific genetic privacy protections to their laws. The first state to protect genetic privacy was Washington. In 2002, Washington amended its health privacy law by adding genetic information to its definition of protected health information.

Here are some basic characteristics of state genetic privacy laws:

  • Aside from Washington, state genetic privacy laws treat genetic information differently from other medical information.
  • Individual control over genetic information is promoted through access rights, civil remedies, consent requirements and property rights.
  • Measures are taken to safeguard genetic information during all phases of handling, including acquisition, disclosure, retention and testing.
  • These laws tend to focus on the information itself, rather than the user or the way the information might be used.

The Future of Your DNA Privacy

In response to public concerns, laws governing the privacy of your DNA have been created to protect you and your family. You can rest assured that any genetic testing you or your children have done will not lead to problems getting a job or health insurance. Becoming part of an informed and caring public will insure that DNA privacy protection laws will continue to improve as needed in the years to come.

Resources

Johnson, A. (2008). Genetic privacy. Retrieved November 20, 2008, from the National Conference of State Legislatures Web site: http://www.ncsl.org/programs/health/genetics/geneticprivacy2004.htm.

‘Lectric Law Library. (n.d.). The ‘Lectric Law Library ‘s legal lexicon on Fourth Amendment. Retrieved November 20, 2008, from the Lectlaw.com Web site: http://www.lectlaw.com/def/f081.htm.

National Human Genome Research Institute. (2008). Genetic Information Nondiscrimination Act of 2007-2008. Retrieved November 20, 2008, from the National Human Genome Research Institute Web site: http://www.genome.gov/24519851.