Alexander DeLuca, M.D.
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A New Twist on an Old Injustice:  
The Impact of Genetic Testing on Employment, Privacy and Public Health  

Alexander DeLuca, August 8th, 2002    adeluca@doctordeluca.com   
Midterm assignment, Human Resources Management in Health Care Institutions, Professor O'Connor, Executive Masters in Public Health program in the Mailman School of Public Health, Columbia University, New York City
Originally posted:2/5/2005 [www.doctordeluca.com/Library/PublicHealth/ImpactGeneticTesting.htm]

The Human Genome Project (HGP) promises to radically alter our understanding of human origins and illness. Through understanding the genome we will be able to predict individual risk of certain diseases and diagnose other conditions that would be easily treated in the early stages but which usually go undetected until the patient presents in middle life with multiple organ system failure in need of high cost care.

Beyond these oft-repeated promises of vastly improved medical care for the individual, a working knowledge of genomics also promises continued and significant financial opportunity. The scientific community has already greatly benefited from the huge public and private investment of genomic research, and “… most [pharmaceutical] companies now expect that the majority of future drug development will come from [genomics.]” (Collins, 1997)  However, realizing the promise depends on continued, relatively unfettered, progress in the field and this depends on continued public support. The major obstacles are no longer technical and scientific; they are human fear and human greed.  

A striking majority of Americans are afraid that corporations with real economic power over them, particularly insurers and employers, will use genetic information (GI) to discriminate against them in pursuit of profit.

·    A 1995 Harris poll of the general population found that over 85% indicated they would be concerned or very concerned if employers or insurers had access to GI; (Collins, 1997)

·    A 1998 survey funded by the National Center for Genomic Resources found that 36% would probably, and 27% would definitely, not take a genetic test if employers and/or insurers could get access to the results. (Goldberg, 2001)  

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At the present time people have little or no effective control over any given sample of genetic material they submit or over the ongoing dissemination and re-dissemination of the results of genetic testing. (Carnovale & Clanton, 2002)  

As many writers have noted, these fears are not unjustified. (Collins & McKusick, 2001)   Evidence suggesting,  “… the potential harm specifically resulting from misuse of genetic information is so great that legal protection is required,”  (Goldberg, 2001) is abundant:

·     National newsmagazine story: A nurse who stumbles upon alleged secret genetic testing of railroad workers; the union files a first-ever suit against a private employer for genetic discrimination in March 2001. (Hawkins, 2001)

·    Norman-Bloodshaw v. Lawrence Berkley Laboratory (9th Cir. 1998) Workers were tested without their knowledge or consent for syphilis, pregnancy and sickle cell trait. (Goldberg, 2001)  

·    A 1989 Northwest Life Insurance survey of 400 employers: “15% planned to check the genetic status of prospective employees and their dependents before making job offers.” (Miller, 1998)

·    A 1996 study: medical researchers document more than 200 cases of genetic discrimination. (Miller, 1998)

The DHHS puts it this way: “The ability to examine DNA for the presence of disease-related alterations opens the door to a new twist on an old injustice: ‘genetic’ discrimination – when people, either as groups or individuals, are treated unfairly because of the content of their DNA.” (Collins, 1997)

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This pervasive fear, if not adequately addressed, will cause people to deny themselves the benefits of genetic testing and threatens to undermine public support for continued research. Workers and patients,

·    will lie, if necessary, to avoid giving doctors or employers accurate predictive medical information,

·    will refuse to participate in any medical research that might possibly have a connection to chronic illness or genetics for fear this be a ‘red flag’ to insurers or employers, and

·    will vote to oppose any further funding of genomics or efforts to compile any central databank, with the result that continued rapid scientific progress is unlikely. (Collins, 1997) .

Cr Craig Venter, CEO of Celera Genomics, said it very succinctly when he testified before the U.S. Senate Health, Education, Labor and Pensions Committee on July 20th, 2000 during the 'Genetic Information in the Workplace' hearings. "A key barrier [to the manifestation of personalized and preventative medicine] is the fear that is pervasive in our society that genetic information will be used to deny health insurance or a job... Without the enactment of legislation, I fear that this new era will be delayed." (Jeffords & Daschle, 2001)

Current Federal law does provide some protection against the misuse of GI, but there are crippling gaps. While Title VII and the ADA apply in particular cases, the most important Federal initiative is HIPAA. HIPAA prohibits the use of GI to deny or limit insurance to members of a group plan, excludes GI from being considered a pre-existing condition, and prohibits insurers from charging one individual more than any other similar member. But HIPAA does not apply to the private insurance market, does not prevent the raising the rates of an entire group on the basis of GI, fails to control insurer access to information, and says nothing regarding the release of genetic information by insurers or other health corporations. (NHGRI, 2001)

For these reasons there is broad support for comprehensive federal legislation prohibiting genetic discrimination. The NIH-DOE Ethical, Legal and Social Implications (ELSI) and the National Action Plan on Breast Cancer (NAPBC) published joint recommendations that would close the loopholes that exist in current Federal statues. These recommendations would:

·         Prohibit using GI to affect hiring or terms of employment,

·         Limit what predictive medical information employers could request,

·         Severely restrict employer access to GI contained in medical records,

·         Prohibit the release of GI without prior written authorization of the individual, and,

·         Subject violators to “strong enforcement mechanisms, including private right of action.” (Rothenberg, 1997)

Genomic technology and genetic testing offer great promise of better medical care and health. They can also be used to deny or limit health insurance, and by extension, employment. The accomplishment of the sequencing of the human genome makes clear that the important barriers to reaping the benefits of our new knowledge and technology are no longer technical. The public perception of genetic discrimination, and the fear and anger it engenders towards employers and insurers, threatens continued rapid scientific progress. Only a sincere commitment on the part of our political and business leaders to comprehensively protect individual from the misuse of GI can address this situation. The recommendations set forth by the NAPBC/ELSI are strong enough to ensure that genetic discrimination will not be tolerated in the American workplace of healthcare insurance market. These recommendations should be enacted into national legislation as quickly as possible.

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