AFFIRMATIVE – EMPLOYMENT – GENETIC SCREENING

AFFIRMATIVE — EMPLOYMENT — GENETIC SCREENING — SIGNIFICANCE 290

GENETIC TESTING OF EMPLOYEES LEADS TO INVASIONS OF PRIVACY

GENETIC TESTING IS A PRIVACY ISSUE

Deron H. Brown, JD Candidate, Thomas Jefferson School of Law, Spring 2000; Thomas Jefferson Law Review, "Book Review: Privacy in the Information Age," EE2001-hxm lxnx

The social policy concerns raised by the availability of genetic information include issues of privacy and autonomy. n36 In the context of genetic testing, autonomy "refers to the right of persons to make an informed, independent judgment about whether they wish to be tested and then whether they wish to know the details of the outcome of the testing." n37 Once a person has submitted to a genetic test, "privacy includes the right to make an informed, independent decision about whether - and which - others may know details of their genome." n38 The concepts of privacy and personal autonomy are interrelated, each "reflecting the importance of a person's ability "to make personal decisions without interference.'" n39

GENETIC DATA PRIVACY MAY BECOME AN ORWELLIAN NIGHTMARE

The Boston Globe, June 6, 1999, SECTION: EDITORIAL PAGE; Pg. G6, TITLE: Genetic privacy // acs-VT2001

As scientists rapidly unlock the secrets of the human genetic code, legislators grapple with the basics of citizen privacy, seeking to protect the individual from misuse of those secrets in a medical frontier that might easily become an Orwellian nightmare.

PREVIOUS GENETIC DISCOVERIES HAVE LED TO WIDESPREAD VIOLATIONS OF PRIVACY

Wendy Wagenheim, legislative director of the American Civil Liberties Union of Michigan, The Detroit News January 27, 2000, SECTION: Opinion; Pg. Pg. A13 TITLE: Michiganians need strong genetic privacy // acs-EE2001

In the early '70s, the promising discoveries about sickle cell anemia resulted in gross violations of medical and genetic privacy, misuse of genetic information and tragic injustice for productive individuals who lost jobs, health care and homes.

GENETIC INFORMATION IS VALUABLE BUT CAN THREATEN PRIVACY AND LEAD TO DISCRIMINATION

As the technology to identify, analyze and manipulate DNA has advanced, our understanding of genetics has multiplied. The federally funded Human Genome Project, a worldwide research effort designed to map and sequence human genes, continues to make new discoveries on a daily basis. While this knowledge may be a blessing in finding cures to a variety of diseases, including Alzheimer's, Huntington's and many forms of cancer, there is cause for concern about how such advances may lead to discrimination and the loss of privacy -- in Michigan and around the nation.

GENETIC PRIVACY IS ESSENTIAL DUE TO THE UNIQUE "HUMAN ESSENCE" INVOLVED

Charles Sykes, Senior Fellow at the Wisconsin Policy Institute, THE END OF PRIVACY, 1999, EE2001 -JGM, p. 130-1

DNA is not simply another piece of data Or medical information, say advocates of special protection, but is, in fact, "the human essence"-what makes individuals special and irreplaceable, The authors of the Genetic Privacy Act-George Annas, Leonard Glantz, and Patricia Roche- argue: "To the extent that we accord special status to our genes and what they reveal, genetic information is uniquely powerful and uniquely personal, and thus merits unique privacy protection."21

They offer three reasons for treating genetic information as even more sensitive than other medical information. First, they describe a person's genetic profile as a sort of "future diary" because it "describes an important part of a persons unique future and, as such, can affect and undermine an individual's view of his/her lifes possibilities. Unlike ordinary diaries that are created by the writer, the information contained in one's DNA, which is stable and can be stored for long periods of time, is in code and is largely unknown to the person. Most of the code cannot now be broken, but parts are being deciphered almost daily." Second, genetic information does not simply involve a single individual. BY definition, genetic information "divulges personal information about one's parents, siblings, and children." And third, they note, there is a long and dismaying history of discrimination and stigmatization based on genetics.22