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Florida enacts DNA privacy law prohibiting use of genetic information for insurance policies

The US state of Florida on July 1 enacted a DNA privacy law prohibiting life, disability, and long-term insurance companies from using genetic information in providing coverage and deciding premiums. This was first reported by the Washington Examiner.

These specific insurers cannot deny coverage, limit, or cancel insurance plans, or even prescribe different premiums based on genetic information or DNA in Florida. In fact, such players cannot require or solicit genetic information or use genetic test results in any manner for insurance. However, individuals still can volunteer DNA information from third-party tests to insurers.

The US already has a framework prohibiting the use of genetic information for health insurance, but does not specifically protect insurance outside of health, such as for life, long-term health, and disability income insurance policies. The Health Insurance Portability and Accountability Act of 1996 (HIPAA) prohibits health insurers from making coverage decisions solely on the basis of genetic information. The Genetic Information Nondiscrimination Act (GINA) 2008, further prohibits insurers from using genetic information in the underwriting process, and in setting premiums.

The law applies to all new and renewed policies after January 21, 2020. House Bill 1189, sponsored by Representative Chris Sprowls, came into effect on July 1, after Florida governor Ron DeSantis approved the bill on June 30. It was passed by the Florida House of Representatives on March 12, 2020.

The definition of genetic information in the bill includes: any variations and mutations, an individual’s carrier status, or genes that may indicate the probability of a disease, or even the genes associated with the risk of developing a disease.

While an individual may voluntarily submit to genetic testing to know about their own genetic history, third parties may seek to obtain this same information for other purposes, such as for use in insurance markets, according to an analysis of the bill. Insurers may use DNA information to exclude high-risk individuals from established risk-pools, or may charge higher premium rates to an individual who is likely to develop a disease.

For instance, the presence of BRCA1 or BCRA2 (both rare gene mutations) in women points to a high risk of them developing breast cancer. This information can be abused to charge those women higher premiums or deny them insurance coverage all together. Similarly, consumers may purchase insurance after learning about certain risk factors, something which upends the basic concepts of insurance coverage, the analysis said.

India’s DNA Technology Regulation Bill

India’s DNA Technology Regulation Bill, 2019, seeks to control the use of DNA technology for identifying persons for law enforcement and other purposes. This was the fourth iteration of the bill, with earlier versions presented in 2007, 2016, and 2018, per PRS India. It was referred to the Standing Committee on Science & Technology and Environment & Forests in October 2019. According to PRS India, the committee has been granted three extensions to submit its report, which is now due on by the second week of the Parliament’s Monsoon Session.

It allows usage of DNA data, including DNA profiles, DNA samples and records, stored with laboratory and data banks, to be used for identification of individuals for:

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  1. Identifying of individuals in criminal cases by law enforcement and investigating agencies
  2. In judicial proceedings
  3. For defence by the accused in criminal cases

Apart from the above, DNA information can be made available for investigations of civil disputes or other civil matters specified in the bill, including those around paternity/maternity disputes, surrogacy, IVF, organ transplantation, medical negligence, and unidentified human remains, and identification of abandoned children. The bill calls for establishment of a DNA Regulatory Board, national and regional data banks, and lays out a framework for DNA labs accreditation.

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