Mapping Public Policy for Genetic Technologies

Chapter 9. Privacy

This chapter was prepared by Brenda Trolin, former program director of NCSL’s Employment and Insurance Issues Program.

Information Contained in this Chapter

Issues of Privacy

Principles of Privacy for Medical Information

Genomics and its attendant technologies raise no new ethical or social questions, but they do involve important issues of equity and social policy. The most pressing of these concerns issues of medical information privacy.

The key principle is to protect individuals against invasion of privacy (including the privacy of genetic information about them), while preserving the ability of academic, government and industrial researchers to use anonymous medical data (including genetic information) to pursue new scientific knowledge and discover new medical treatments.

Medical information privacy issues before state legislatures are concerned with individual privacy and preventing abuses in employment, health and life insurance, family life, and criminal justice.

Genetic testing produces personal medical information. The treatment of personal medical information raises important questions. These questions apply to a wide range of personal information, and are not limited only to the results of genetic tests. Questions being debated include:

Who will collect the data?
Who should be tested?
Who will have access to it?
What use will they make of it?
Is there any justification for testing if no therapy is yet available?
Should young children be tested?
Who should know the results of the tests? Do they have a right to know, or just an interest in knowing? Should one tell children, siblings or spouses of affected persons? (If the disease is inherited, other family members might be affected.) Should employers be told?
Do insurers have a right to the information? Should health insurers be allowed to factor a carrier’s genetic status into premiums or to deny coverage completely? (A carrier carries a single mutated gene, two copies of which are needed to cause disease; the carrier will not develop the disease but the carrier’s offspring might.)
What kind of support do people need to interpret and cope with the results of tests–whether those results are good or bad?

As public policymakers delve more deeply into this complex area, additional questions will arise.

Issues of Privacy

Principles of Privacy for Medical Information

A major point of discussion is whether genetic information should be separated and regulated distinctly from other medical information or whether it should be considered simply as another piece of critical medical information. Genetic information privacy clearly is important, but so is an individual’s medical history, HIV status, mental health record and a host of other data.

Another major point involves private individuals versus research subjects. Rules must balance the control of research subjects over information and samples against the ability to conduct research. Restrictions on nonidentifiable genetic information and samples could severely hinder many research programs. Specifically, allowing individuals to arbitrarily revoke permission to use anonymous samples and information could destroy long-term research projects.

Debate is focusing on whether rules should sharply distinguish anonymous samples and data from those that can be linked to an identifiable individual and whether, in fact, this can be done. Informed consent clearly may be required for the procedures that are used to collect certain kinds of samples or data (by biopsy, for example), but the question remains as to whether informed consent should be required for the collection and use of the data only where the data are personally identifiable. (Table 9-1 lists 1997 legislation introduced regarding confidentiality of patient information.)

In summary, state legislators will continue to consider the following critical issues:

Balancing privacy rights of the individual with the benefits society may receive from genetic research.
Safeguarding medical information, including genetic information from discriminatory misuse.
Determining whether genetic information should be considered differently than other medical information.
Helping to determine whether a national standard should be set for privacy protection and for the use of genetic information and research samples.
Considering privacy legislation to protect the current practice of storing tissue samples.
Determining whether existing and proposed privacy legislation provide effective remedies for violation.

The National Conference of State Legislatures has created a legislative task force to review issue related to genetic technologies. In its initial meeting, the task force identified privacy issues and discrimination issues as the two most important areas for legislative review. Beginning in 1998, the task force will begin deliberations on these topics.

To Table 9-1. Confidentiality of Patient Medical Information Legislation Introduced in 1997

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