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Panel Comment: The Attempt to Pass the Genetic Privacy Act in Maryland

Published online by Cambridge University Press:  01 January 2021

Neil A. Holtzman
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Extract

The Genetic Privacy Act (GPA) is a comprehensive effort to protect individuals from unauthorized analysis of their DNA and from unauthorized disclosure of information resulting from genetic analysis. Irrespective of merit, every bill must survive legislative scrutiny. This is a considerable challenge, particularly for a bill as complex and far-reaching as the GPA. To illustrate my point, I describe the fate of two bills introduced into the Maryland Senate in 1995 by Senator Jennie Forehand. The first, also entitled the Genetic Privacy Act (S. 645), was a slightly modified version of the model legislation prepared by Annas, Glantz, and Roche. After a hearing, the bill received a 9-2 unfavorable vote from the Economic and Environmental Affairs Committee. The second was a much shorter bill, DNA Testing – Informed Consent and Confidentiality (S. 707), which simply stated that “DNA analysis may only be performed with the informed consent of the person being analyzed” and that the results of such analysis “are the exclusive property of the person tested, are confidential, and may not be disclosed without the consent of the person being tested.” This bill had a hearing but was never put to a vote by the Judicial Proceedings Committee. My principal aim is to examine the testimony on these bills. I will conclude with some suggestions about accomplishing the goals of genetic privacy legislation.

Type
Article
Information
Journal of Law, Medicine & Ethics , Volume 23 , Issue 4 , Winter 1995 , pp. 367 - 370
Copyright
Copyright © American Society of Law, Medicine and Ethics 1995

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References

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Senate Bill 645 differed slightly from the GPA as follows. One, it defined genetic analysis as “an analysis of a DNA sample that results in private genetic information about an individual” (§ 4-501(H)). The GPA omits a definition. Two, it stated that authorization for collection or disclosure of an identifiable DNA sample “may not be coerced” (§§ 4-504(B), 4-505(a)(2)). Three, it included in the information to be verbally provided to a sample source the warning “that access to the results of genetic analysis by insurance companies, employers, or other third parties may occur if the sample source authorizes their disclosure and the disclosure may lead to discrimination against the source...” (§ 4-505(A)(8)). Fourth, unlike the GPA, Senate Bill 645 did not require the sample source's informed consent if the DNA sample was to be used anonymously for research. Fifth, it required the sample source's authorization before information obtained from an authorized use of a DNA sample could be included in the sample source's medical record (§ 4-509(G)). And sixth, it did not stipulate monetary fines for negligent or willful collection of disclosure of a DNA sample or genetic information in violation of the statute, although the other penalties were similar to those in the GPA (§ 4-528-531).Google Scholar
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The mutation, however, must be present in the proper gene dosage for the disease to appear—single dose for dominant diseases and X-linked recessive diseases in males, double dose for autosomal recessive diseases. Even in the proper dosage, the severity, and age of onset, of a disease will vary among people with the same mutation. In the case of Huntington's disease and other disorders in which the mutation consists of a change in the number of trinucleotide repeats, the precise cutoff in the number of repeats before the disease is manifest cannot always be established.Google Scholar
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Similar language would also improve the chances that Senate Bill 707's successor will gain passage. Bill 707 is ambiguous on this point: “‘DNA analysis’ means a series of medical tests that detect changes in a person's genetic code which lead to disease.”Google Scholar
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