The Genetic Information Nondiscrimination Act
In January, Senators Ted Kennedy (D.-MD) and Mike Enzi (R.-WY) introduced a bill (The Genetic Information Nondiscrimination Act, or GINA) to protect the public from having their genetic information used against them. This legislation is aimed at keeping employers and health insurers from withholding jobs or coverage based upon a genetic predisposition for a medical disorder. This is a bipartisan legislative effort that George Bush has already agreed to support. In fact similar bills have been passed in the Senate before (2003 and 2005), but each time the House of Representatives has stopped them.
The mapping of the genetic code is arguably the most important contemporary advance in medical science. Without privacy protection, it is assumed that many patients will refuse to fully embrace DNA therapy. Imagine that your physician recommends that you have your genetic profile (or "genome") created. He wants to assess your risk for developing a number of diseases and, where appropriate, prescribe measures to minimize those risks. You are about to consent to his plan, but then you hesitate, having read that insurance companies may gain access to your records. Will you take the chance, knowing that your premiums could skyrocket as a result? You may even be dropped from your plan. Perhaps your employer will acquire your health records and be prejudiced against offering you that big promotion. Could prospective employers consider your health records in their decision of whether or not to hire you? What's your level of confidence that this won't happen?
Indeed such concerns are even limiting the progress of current genetic research. Scientists are having a hard time convincing people to become subjects of DNA studies. Many otherwise well-meaning individuals don't want to participate if researchers can't guarantee that the information gleaned from them won't someday come back to haunt them.
So who's against this legislation? The most common argument I have heard against GINA is that it is going to cause "frivolous lawsuits". I've always found this little piece of vernacular amusing. How do we define "frivolous"? Surely the complainant would not characterize his/her suit as such. This type of rhetoric is always trotted out by large corporations who want to limit their legal liability. Find a controversial issue relating to the insurance industry, and surely this phrase tarries nearby. Of course the health insurance companies are "very concerned" that GINA could effect the quality of health care provided. We should only hope so.
Then there are the free market folk from the American Enterprise Institute. They say that genetic discrimination is too new to constitute any kind of real problem. They fear that any sort of legislative regulation will inevitably broaden to include "unintended consequences" (which are not specified). Representative John Kline (R.-MN) echoes such fears with the warning, " "We don't necessarily need a broad, federal mandate. If legislation is needed -- and the jury is still out -- we should target the solution to the problem, rather than going after a mosquito with a machine gun."
Even if GINA passes, there are still some thorny aspects of genome use that may need to be addressed by the federal government. Throughout the Twentieth Century, states have had various sterilization laws on the books, aimed at reducing the incidence of genetic defects such as mental retardation, mental disease, epilepsy, blindness, and hearing impairments. With readily available information about the genetic composition of individuals- how do ethics change regarding procreation and disclosure? If a person becomes aware of the presence of a gene that could cause a recessive disorder, what ethical responsibility do they have in sharing this information with a prospective mate?
And what about using genome information for law enforcement. It is now common for detectives to pursue DNA samples from suspects during criminal investigations. What are the laws regarding this information? Can agencies compile a nationwide database of so-called DNA "fingerprints"? Could they eventually merge their nascent criminal profiling techniques with the database in order to identify suspects that match the characteristics of the profile?
When it comes to genetic privacy, as in many other fields of scientific endeavor- the philosophy of ethics and morality has lagged behind the quality of advancing technology. The decisions our leaders make (or fail to make) are going to have lasting repercussions. I would prefer that legislators err on the side of caution, and provide individuals with as much protection as possible. Corporations will, by their very nature, exploit any information available for the greatest potential profit. It is up to our elected leaders to draw the line.
The mapping of the genetic code is arguably the most important contemporary advance in medical science. Without privacy protection, it is assumed that many patients will refuse to fully embrace DNA therapy. Imagine that your physician recommends that you have your genetic profile (or "genome") created. He wants to assess your risk for developing a number of diseases and, where appropriate, prescribe measures to minimize those risks. You are about to consent to his plan, but then you hesitate, having read that insurance companies may gain access to your records. Will you take the chance, knowing that your premiums could skyrocket as a result? You may even be dropped from your plan. Perhaps your employer will acquire your health records and be prejudiced against offering you that big promotion. Could prospective employers consider your health records in their decision of whether or not to hire you? What's your level of confidence that this won't happen?
Indeed such concerns are even limiting the progress of current genetic research. Scientists are having a hard time convincing people to become subjects of DNA studies. Many otherwise well-meaning individuals don't want to participate if researchers can't guarantee that the information gleaned from them won't someday come back to haunt them.
So who's against this legislation? The most common argument I have heard against GINA is that it is going to cause "frivolous lawsuits". I've always found this little piece of vernacular amusing. How do we define "frivolous"? Surely the complainant would not characterize his/her suit as such. This type of rhetoric is always trotted out by large corporations who want to limit their legal liability. Find a controversial issue relating to the insurance industry, and surely this phrase tarries nearby. Of course the health insurance companies are "very concerned" that GINA could effect the quality of health care provided. We should only hope so.
Then there are the free market folk from the American Enterprise Institute. They say that genetic discrimination is too new to constitute any kind of real problem. They fear that any sort of legislative regulation will inevitably broaden to include "unintended consequences" (which are not specified). Representative John Kline (R.-MN) echoes such fears with the warning, " "We don't necessarily need a broad, federal mandate. If legislation is needed -- and the jury is still out -- we should target the solution to the problem, rather than going after a mosquito with a machine gun."
Even if GINA passes, there are still some thorny aspects of genome use that may need to be addressed by the federal government. Throughout the Twentieth Century, states have had various sterilization laws on the books, aimed at reducing the incidence of genetic defects such as mental retardation, mental disease, epilepsy, blindness, and hearing impairments. With readily available information about the genetic composition of individuals- how do ethics change regarding procreation and disclosure? If a person becomes aware of the presence of a gene that could cause a recessive disorder, what ethical responsibility do they have in sharing this information with a prospective mate?
And what about using genome information for law enforcement. It is now common for detectives to pursue DNA samples from suspects during criminal investigations. What are the laws regarding this information? Can agencies compile a nationwide database of so-called DNA "fingerprints"? Could they eventually merge their nascent criminal profiling techniques with the database in order to identify suspects that match the characteristics of the profile?
When it comes to genetic privacy, as in many other fields of scientific endeavor- the philosophy of ethics and morality has lagged behind the quality of advancing technology. The decisions our leaders make (or fail to make) are going to have lasting repercussions. I would prefer that legislators err on the side of caution, and provide individuals with as much protection as possible. Corporations will, by their very nature, exploit any information available for the greatest potential profit. It is up to our elected leaders to draw the line.
posted by Merge Divide at 5:27 PM
1 Comments:
Yo. Gotta laugh at the term frivolous law suit! Anyone with the capacity to think should know that judges typically don't waste much time on them. They throw them out.
Some things I read in the proposed bill:
SEC. 101. AMENDMENTS TO EMPLOYEE RETIREMENT INCOME SECURITY ACT OF 1974.
Paragraph (n)(3)(B)(i) IN GENERAL- The amount of the penalty imposed by subparagraph (A) shall be $100 for each day in the noncompliance period with respect to each individual to whom such failure relates.
and
Paragraph (n)(3)(D)(iii) OVERALL LIMITATION FOR UNINTENTIONAL FAILURES- In the case of failures which are due to reasonable cause and not to willful neglect, the penalty imposed by subparagraph (A) for failures shall not exceed the amount equal to the lesser of--
(I) 10 percent of the aggregate amount paid or incurred by the employer (or predecessor employer) during the preceding taxable year for group health plans; or
(II) $500,000.
The numbers could be argued for both sides I think. While the violator may find the numbers to be too high, the violated individual may view it as too much protection for the violator.
Let's say, for example, there's a case in which one has violated this intentionally, yet their attorney can find a way to argue that there exists a lack of substantial evidence. The case could get ruled as an unintentional violation, thus knocking down an individual's compensation significantly. (Hopefully this over simplification says enough.)
The same numbers are in SEC. 102. AMENDMENTS TO THE PUBLIC HEALTH SERVICE ACT.
This bill doesn't seem to protect the public as much as it protects the almighty corporation. I'd suggest a revision that truly has privacy protection at its core.
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