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American Medical News

American Medical News

 
OPINION

Letters to the Editor - May 10, 2004


Will genetic testing become the basis for a new caste system? - Tax credits for health insurance not in sync with realities of low-income life - "Gold" and "green" roads provide best paths for open access to journals


Will genetic testing become the basis for a new caste system?

Regarding "Protecting genetic privacy" (Article, April 5): Your interview with Francis Collins, MD, PhD, was quite thought-provoking. I certainly agree with Dr. Collins that we need to protect our "genetic privacy," and that HIPAA and the Americans With Disabilities Act will not provide that protection. Further, there is consistent and overwhelming public support for limiting access to such information, especially when such data might be used by insurers or employers to discriminate.

However, most information an insurer needs to rate life or health insurance is already available through routine testing, medical and family history: Genetic testing will add little in most cases. In addition, I am not convinced that genetic testing is either distinct or exceptional, at least as such testing applies to risk determination or genetic discrimination. It is important to develop a comprehensive policy on the use and abuse of medical information, of which genetic information is but one sub-type.

We misconstrue the importance of our "genetic code" by making the assumption that it alone determines our destiny. It is but the skeleton of who we are or will be. However, I am concerned that genetic information will be (wrongly) treated as if it is determinative, and used to discriminate in society at large.

My concern is that we will increasingly define a person by his or her genetic information, creating a socially acceptable "caste system." For example, since a medical license is a privilege and not a right, why not add a "Genetic Disease Index (GDI)" to the criteria for admission to medical school, to assure that we graduate only healthy physicians? Or limit admission to law school to persons not genetically predisposed to alcohol abuse?

Finally, with the suggestion in the recent genetics literature that violent antisocial behavior is highly associated with certain genetic patterns (when combined with childhood abuse), should we even wait until someone commits a crime before isolating them from normal society? Or should we at least increase a criminal sentence based on a genetic pattern, as we now do with multiple offense convictions?

The potential abuse of genetic information has raised many more issues than mere insurance or employment discrimination. I strongly agree with the answer Dr. Collins gave to the question "Would you have any qualms about undergoing genetic testing in the current environment? His answer: "Yes, I would." Until we decide to protect such information against broad social abuse, genetic testing is not "safe."

--Curtis E. Harris, MD, Ada, Okla.

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Tax credits for health insurance not in sync with realities of low-income life

Regarding "Study criticizes health insurance tax credit plan" (Article, April 19): When I see payday loan shops on many corners of the streets around my own office and when my own employees, whom I included in my pension plan, are borrowing as much money as they can against their benefits, it makes me wonder how anyone really believes that tax credits are going to be a meaningful benefit to the poor uninsured.

I am afraid these potential solutions are being conceived by people who have no concept of how the poor are actually living.

--Hubert Neil Williston, MD, Baytown, Texas

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"Gold" and "green" roads provide best paths for open access to journals

Regarding "Journal free for all" (Article, April 19): Your article reports on the fact that access to research output is blocked by access tolls and that open-access journals such as Public Library of Science's PLoS Biology could be providing a remedy.

But your reporting overlooks another, faster, surer remedy.

There exist today 24,000 research journals (across all disciplines and languages, worldwide) publishing about 2.4 million articles per year. There are fewer than 1,000 open-access journals like the PLoS and BioMed Central journals, publishing about 100,000 articles per year.

What about access to the 2.3 million articles for which there exists no suitable open-access journal today? Should researchers wait for 23,000 more open-access journals to be created one by one? It's likely to be a long, long wait. Yet there is another road to open access, and that is for the authors of those 2.3 million articles in those 23,000 journals to self-archive them on their own institution's Web site. That will make them all open access overnight.

These two complementary roads have come to be called the "golden" and "green" roads to open access. Publishing in open-access journals is the golden road, but with only 1,000 journals, this road alone is too narrow, slow and uncertain.

The green road is to publish in conventional journals but also to self-archive the article on the author's institutional Web site. The color "green" comes from the fact that nearly 60% of publishers have already shown their support for open access by giving their authors the official green light to self-archive, but without the journal itself needing to take the risk of converting to gold.

The green road already provides at least three times as much open access as the golden road, but it could be providing far more. The longer we wait, the bigger will be our growing daily, weekly, monthly and yearly loss of research impact because of access denial to would-be users worldwide.

This represents a huge needless cumulative loss of research progress and productivity for researchers, their institutions, their funders and ultimately for the taxpayers who fund the funders. It's time for universities and research funders to do something about it.

--Stevan Harnad, PhD, Canada research chair, Cognitive Neuroscience Centre, University of Quebec at Montreal

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Copyright 2004 American Medical Association. All rights reserved.
 
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