Staying ahead of the double helix

Staying ahead of the double helix

Context:

  • The Delhi High Court recently ruled against discrimination in health insurance by United India Insurance Company involving a person with a heart condition which was perceived to be a genetic disorder.

Court ruling:

  •  The court held, “Discrimination in health insurance against individuals based on their genetic disposition or genetic heritage, in the absence of appropriate genetic testing and laying down of intelligible differentia, is unconstitutional.”

Genetic discrimination (GD):

  •  Genetic discrimination (GD) is understood to be differential treatment of those not showing symptoms but who are nevertheless treated differently on the basis of any real or assumed genetic characteristics.

Eugenics:

  • There were robust policies of eugenics in the U.S. in the 1900s.
  • These led to laws in many States that made sterilisation compulsory for those who expressed a range of conditions believed to be inherited.
  • Such conditions covered those with disability, who were poor, had mental health problems, were promiscuous, and were dwarfs, and so on.
  • Eugenics was also practiced in many countries in Europe, not just in Nazi Germany.
  •  Nordic countries, for example, passed eugenics laws in the 1930s and some of those stayed in the books until the 1970s.

American precedent

  •   In the U.S., researchers working with the Council for Responsible Genetics in Cambridge, Massachusetts recorded hundreds of cases of misuse of genetic information.
  • There are many examples of employers and insurers using genetic information to engage in discriminatory policies.
  •  In the U.S., the Genetic Information Nondiscrimination Act (GINA) was signed into law in 2008.
  • GINA provides strong protection against access to genetic information and genetic discrimination in the context of health insurance and employment.
  • GINA prohibits insurers from “requesting or requiring” genetic tests from an individual or members of the person’s family, or using genetic information to determine eligibility or establish premiums.
  • It also prohibits employers from “requesting or requiring” genetic information for hiring or promotional decisions, or when determining eligibility for training programmes.

Genetic Non-Discrimination Act:

  • The Council of Europe has adopted a set of recommendations on the use of genetic information for the purpose of insurance.
  • Canada’s recent Genetic Non-Discrimination Act makes it illegal for insurers or employers to request DNA testing or results.
  • It is reported that insurers in the U.K. are currently under a voluntary moratorium agreed upon between the Association of British Insurers and the government until 2019.
  • Based on this agreement, results from genetic tests are not to be used for health or life insurance except for Huntington’s disease, which is dominantly inherited with a high penetrance.

A complex future

  • The situation is likely to get worse as people become more accepting of predictive genetic tests and insurance companies insist on them.
  • There are also serious concerns related to the protection and privacy of medical and genetic data.

Way ahead:

  • India needs a law that prevents genetic discrimination.
  • In this era of rampant genetic testing, there is  need to prevent discrimination and uphold “equal treatment under the law”.
  • There should therefore be no discrimination based on genetic information. Insurance is developed from pooling risks.
  •  Universal health care can therefore be a viable solution.
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