DNA Discrimination Legislation Needed?

Sharon Begley, Bill Seeking to Ban DNA Discrimination Isn’t Really Necessary, Wall Street Journal, Feb 6 2004. (available only to subscribers)

Last October the Senate unanimously passed (S. 1053) the Genetics Information NonDiscrimination Act (see my post). Sharon Begley, columnist for the WSJ, picks up the story today by noting that the House of Representatives has so far “shown no interest in bringing [the bill] to a vote.” In the house, the bill is called (H.R. 3636) the Genetic Privacy and Nondiscrimination Act of 2003.

She argues that the threat of genetic discrimination is “grossly overstated.” She is not alone in this view. For example, Mark Hall and Stephen Rich of Wake Forest recently looked at the prevalence of requests for genetic information by health insurance companies, in states with genetic privacy laws on the books and those without them. They found “that there are almost no well-documented cases of health insurers either asking for or using presymptomatic genetic test results in their underwriting decisions, either (a) before or after these laws have been enacted or (b) in states with or without these laws.”

She challenges the symbolic value of the bill, “…to allay the fears of people who reject genetic tests in the belief that a positive result could make them uninsurable and unemployable” because “[b]y enshrining genetic status in federal law, we reinforce the widespread and pernicious belief that DNA is destiny. It isn’t…”

She concludes with the following maxims: “Supporters of the genetic discrimination bill should make clear that what they want to guard against is no more than a theoretical risk. They should make equally clear that the risk genes they’re so worried about are not all they’re cracked up to be.”

February 6, 2004 | Filed Under insurance, legislation, policy, privacy | Comments Off 

Senate passes Genetics Information Nondiscrimination Act

On Tuesday, the Senate unanimously passed the Genetic Information Nondiscrimination Act of 2003 (S. 1053).  It was approved by the Senate Committee on Health, Education, Labor, and Pensions in May.  The bill now goes to the House for consideration.

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Helen Dewar, Senate Backs Safeguards for Genetic Data, Washington Post, October 15, 2003

Kate Dalke, Genetic Nondiscrimination Bill Passes U.S. Senate, Genome News Network.

Ira Carnahan, Gene Policy, Forbes, October 22, 2003.

Office of Legislative Policy and Analysis has a brief summary of genetic discrimination legislation (yet to be updated at the time of this post).

 

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October 16, 2003 | Filed Under legislation | Comments Off 

Robertson looks at ethical/legal issues of $1k genome

John A. Robertson, The $1000 Genome: Ethical and Legal Issues in Whole Genome Sequencing of Individuals, The American Journal of Bioethics: Volume 3 Number 3. (Article is free: HTML or PDF)

From the abstract:

Using the idea of $1000 genome as a focus, this article reviews the main technical, ethical, and legal issues that must be resolved to make mass genotyping of individuals cost-effective and ethically acceptable. It presents the case for individual ownership of a person’s genome and its information, and shows the implications of that position for rights to informed consent and privacy over sequencing, testing, and disclosing genomic information about identifiable individuals. Legal recognition of a person’s right to control his or her genome and the information that it contains is essential for further progress in applying genomic discoveries to human lives.

October 12, 2003 | Filed Under legislation | Comments Off 

Genetics Legislation Resources at the NCSL

As part of their Genetics Technology Project, the National Conference of State Legislatures (NCSL) maintains several resources concerning genetics legislation.

An updated list of reports filed by state legislative bodies.

Summaries of recent legislative activity, including the bill name,
state of origin, link to the bill, a summary, and its status. This
activity is divided into the following categories: genetics and privacy, genetics and employment, and genetics and health insurance.

The NCSL also provides tables of information summarizing current laws by state, according to the same categories: privacy, employment, and health insurance. 

 

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October 11, 2003 | Filed Under legislation | Comments Off 

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