DNA discrimination

Friday, July 25

New legislation in the United States and elsewhere has banned the use of genetic testing to deny health insurance or job opportunities. Such laws aim to increase consumer acceptance of genetic screening technology, which has been dampened by privacy concerns, but could also create additional near-term costs.

In May, President George Bush signed the Genetic Information Non-Discrimination Act (GINA), which seeks to prevent discrimination against people who receive a genetic test, by their insurers and employers.

Insurer restrictions

Key provisions are directed specifically at health insurers:

• Health plans or insurers may not require customers to undergo a genetic test, although they can ask customers to participate voluntarily in genetic research.
• Insurers may not obtain genetic information for underwriting purposes -- either to determine premiums, or to exclude people from health plan membership or coverage.

Employer restrictions

It also has implications for employers, which play a major role in the largely employer-based US healthcare system:

• It prevents employers from obtaining or requesting genetic information.
• It prohibits them from hiring or discharging employees, or determining wages, based on genetic data.
• It requires employers who possess genetic information to treat it as a confidential 'medical record'.

Ethical concerns. GINA is animated by ethical principles. For example, if insurers used genetic tests to assess the cost of insurance to a customer, it would discourage many customers from seeking a diagnosis. Moreover, since insurance is required to access most US health services, it is probably unjust for insurers to discriminate against a customer based on their genetic characteristics.

However, employer and insurer concerns about the law are not without merit:

• New ethical precedent. It is unethical and has long been illegal for employers to discriminate against potential employees based on particular genetic characteristics, such as skin colour or gender, which do not affect job performance. GINA makes it illegal to discriminate based on genetic diseases or disorders, regardless whether those disorders reduce a person's fitness for employment. Thus, GINA is somewhat more restrictive than accepted ethical standards for employment.
• Accidental family disclosures. Sometimes, a family history of disease is revealed accidentally to an insurer or employer. While GINA does not prescribe penalties in these cases, such information cannot be used by insurers or employers to restrict access to employment or insurance coverage.

The US Chamber of Commerce registered its opposition to GINA partly because of complications that arise in cases of accidental family disclosure. For example, if an employee takes leave to look after a relative with a genetic disease, that leave record is defined as genetic information and must be treated as confidential. While insurers are equipped to protect confidential medical information, employers are often not, and may find themselves at risk of legal penalties.

Outlook: Efforts to curb 'genetic discrimination' may create new compliance costs for employers and could create expensive asymmetries of information between insurers and their customers. Yet as genetic testing technology gains acceptance, enshrining higher ethical standards in law may become financially beneficial for all, by improving the early detection and treatment of disease.