Varela, Marta B.

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NYLS Journal of Human Rights Volume 18 Issue 1 Article 2 2001 Foreword - Personal Genetic Information: Implications for the Workplace and Criminal Justice Marta B. Varela Follow this and additional works at: https://digitalcommons.nyls.edu/journal_of_human_rights  Part of the Law Commons Recommended Citation Varela, Marta B. (2001) "Foreword - Personal Genetic Information: Implications for the Workplace and Criminal Justice," NYLS Journal of Human Rights: Vol. 18 : Iss. 1 , Article 2. Available at: https://digitalcommons.nyls.edu/journal_of_human_rights/vol18/iss1/2 This Article is brought to you for free and open access by DigitalCommons@NYLS. It has been accepted for inclusion in NYLS Journal of Human Rights by an authorized editor of DigitalCommons@NYLS. ForewordPersonal Genetic Information:Implications for the Workplace andCriminal JusticeMarta B. Varela*When confronted with technology whose implications are notyet made out, human beings have a choice: fight or flight. While itmay seem natural to many, trained in methods of analytic inquiry,to persevere against the specter of fear by asking the tough policyquestions, a seemingly valid response is to throw up walls to its use,on the theory that if Pandora's Box stays shut, no one need fearwhat is clamped down inside.Personal generic information presents just such a dilemma.The massive amount of information gleanable from a fragment ofindividual human tissue presents a particular challenge to notionsof privacy, long enshrined in the United States as the bedrock ofour particular combination of individual freedom and indepen-dence from intrusive government.The question "How shall use of genetic information be gov-erned?" leads to a further, inquiry, "For what purpose?" and ulti-mately to a more fundamental inquiry, "Is the purpose legitimate inlight of our values?"In the criminal justice arena, the certainty DNA testingpromises is, experts admit, tinged with qualification if the testedsample has been tainted by contact with other matter. More funda-mental to civil libertarians is the propensity of law enforcement touse universal DNA testing as the next big advance in the battle toassert the police power of the state. Not surprisingly, thoughtfullaw enforcement representative representation object, explainingthat the astounding accuracy of even the most economically low-* Marta B. Varela, J.D., LL.M., is the Commission Chair of the New YorkCity Commission on Human Rights, a municipal agency whose primary functionsare to investigate and prosecute discrimination complaints under the City's civilrights ordinance and to work with local communities to foster positive intergrouprelations. She has been the head of the New York City Commission on HumanRights since January 1994.N.Y.L. SCH. J. HUM. RTS. [Vol. XVIIIcost test rules out the likelihood of a miscarriage of justice, even ifjuries are unduly swayed by the near-certainty DNA testingprovides.Of equal concern, not just to those who seek to avoid havingtechnology disturb settled contractual relationships between insurerand insured, is the use of DNA testing as a predictive health tool.DNA testing at this stage is both diagnostic and projective: withrespect to some medical conditions it can identify an almost-over-whelming likelihood that an individual will be afflicted with a par-ticular condition during his lifetime. It also can provide much lessdefinitive indications that an individual that an individual is suscep-tible to another medical condition, In the background of the debateover whether such information may be private, looms the muchlarger debate about access to health care and what private insur-ance companies should have to provide members. Even further inthe background is debate over whether in consequence of advancesin DNA testing and future greater predictive ability, some forms ofhealth care may not be better shouldered by government entitiesbetter able to assume responsibility for individual claims projectedon the basis of DNA evidence of a propensity to catastrophic ill-ness. This is a public health use triggered by the not incomprehen-sible response of the public to the threat of being disqualified fromhealth care on account of a genetic history they had no controlover.While genetics may be as incomprehensible to the public asprogramming languages once were, there is no doubt in the mindsof those amateurs who have troubled to inform themselves some-what, let alone in the minds of consumers of DNA technology, thatits implications for Americans' lives will be immense. The sympo-sium presented today seeks to disseminate a greater awareness ofthe significance of genetic testing, whether in law enforcement oramong the law-abiding. The inquiry required will have to be a sus-tained one if it is to penetrate beyond an easy, surface understand-ing. Today's symposium brings together for the first time ascientist, civil libertarians, law enforcement officials, insurance in-dustry representatives and policy-makers in the health care field. Itis my hope that this successful meeting will spawn many more simi-lar symposia. For only an intellectual search at the highest level willengage the difficult issues our society will have to confront in conse-quence of the development of DNA testing. It would not be inap-2001] FOREWORD iiipropriate to compare the information that can be collected in oneplace as a result of DNA analysis to Gutenberg's invention of mov-able type and the consequent explosion of the dissemination of in-formation through printed means. Unlike the computer, movabletype disseminated information that had not previously been availa-ble as it spurred writing for publication, while the computer merelyguarantees a larger audience than printed matte might enjoy. Simi-larly, DNA testing makes available information that had not beenpreviously available. As advances in accuracy of testing and effi-ciencies in the production of tests bring down the cost, it is impor-tant, in the interest of the privacy we value, to consider the policyissues before the technology outpaces our ability to manage its ben-efits and unintended consequences.

Foreword - Personal Genetic Information: Implications for the Workplace and Criminal Justice

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Foreword - Personal Genetic Information: Implications for the Workplace and Criminal Justice

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