NEGATIVE — EMPLOYMENT — WORKPLACE GENETIC SCREENING 313

NO SOLVENCY UNLESS PRIVACY OF ALL MEDICAL RECORDS IS COVERED

PROTECTION OF GENETIC INFORMATION REQUIRES PROTECTING ALL MEDICAL INFORMATION

Charles Sykes, Senior Fellow at the Wisconsin Policy Institute, THE END OF PRIVACY, 1999, EE2001 -JGM, p. 132-3

The answer is riot to leave genetic information unprotected, but to create protections for all medical information, includimg genetic data. Indeed, most attempts by state legislatures to protect genetic privacy have proven to he weak and inadequate. Though some of them limit the use of genetic information in the provision of health insurance, they do not extend the protections to life. or disability insurance. Part of the problem is that while many of the laws limit the ways in which employers can use the information, they do not actually restrict access to the information. But, as Rothstein argues, if the goal of such legislation is to ensure privacy, then the focus of legislation cannot be limited simply to how the information is used-it must be on restricting access to the information in the first place. Most of the legislation seeks to prevent unlawful, inadvertent, and unauthorized disclosures of genetic information. Although that is a laudable goal, a much more significant problem is the authorized disclosure of genetic information. As a condition of employment or insurance, individuals can still be required to execute a release authorizing the disclosure of medical (including genetic) information. Notes Rothstein: "All the procedural measures in the world will not protect the confidentiality of the information under these circumstances.

GENETIC INFORMATION CANNOT BE SEPARATED FROM MEDICAL INFORMATION

Charles Sykes, Senior Fellow at the Wisconsin Policy Institute, THE END OF PRIVACY, 1999, EE2001 -JGM, p. 132

The reality is that much of what we consider routine medical information has a genetic component, including our family histories. As the science advances, it seems likely that genetic testing and information will increasingly be integrated into everyone's medical records as a standard part of diagnostic tests and medical profiles. Genetic information is already so deeply embedded into the practice of medical underwriting that it seems both impractical and unlikely that any attempt to somehow screen it out or segregate the material could ever be adopted in the real world. As a practical matter, doctors would have to edit each and every medical record, chart, and history, to delete any reference to family histories or other genetic information. This would not only be time-consuming, and expensive, it would likely prove to be impossible. "Genetic information," writes Mark Rothstein, "is deeply ingrained in medical information, and if there ever was a time when the two could be separated, that time has passed.

CONCERN OVER GENETIC PRIVACY COULD UNDERMINE EFFORTS TO PROTECT MEDICAL PRIVACY IN GENERAL

Charles Sykes, Senior Fellow at the Wisconsin Policy Institute, THE END OF PRIVACY, 1999, EE2001 -JGM, p. 132

The point here is not to debunk genetic information, but to point out

that it is not unlike other medical information in its sensitivity "Genetic information is special because we are inclined to treat it as mysterious, as

having exceptional potency or significance, not because it differs in some fundamental way from all other sorts of information about us," notes Thomas Murray, the director of the Center for Biomedical Ethics at Case Western Reserve University School of Medicine." By focusing exclusively on the threat to privacy posed by genetics, we might unintentionally compromise other efforts to protect medical privacy in general.