A privacy interest

May 11, 2000

Access to DNA data ranks high on anyone's medical-ethics chart. One issue we all face is the "freedom not to tell" about our DNA. In legal jargon, it's known as a privacy interest.

Here are two realities of the coming genomic era as it applies to protecting DNA privacy: state prisoners and members of the same family.

The fastest developing area in the use of gene information is the criminal justice system. Thanks to the OJ trial, everyone knows about DNA and evidence.

Not widely known is gene banking, a universal practice in the US and Britain. In the UK, DNA data is recorded at every arrest. It is not banked if the person is exonerated. Every state in the US now has a DNA databank on every convicted felon.

The ostensible and practical purpose of such genetic record keeping is to assist in the capture of repeat offenders - recidivists. They are a very big percentage among convicted felons. The state has an interest in knowing the genes of convicted criminals because convicted criminals are the people most likely to commit crimes.

Legislatures and courts have decided convicted felons don't have a privacy interest, says Philip Reilly, an attorney and medical geneticist in Waltham, Mass.

When it comes to families, genes don't come alone. They have relatives. We will have to craft a new ethic for families to share genetic information, says Dr. Reilly.

Should a diagnosis that suggests a hereditary disease be reported by a medical practitioner to other members of the family? Or does the individual have a privacy right that his or her doctor must honor above that of other family members' right to know?

Blood may be thicker than water, but courts will likely determine that genes are even thicker.

(c) Copyright 2000. The Christian Science Publishing Society