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21 Seton Hall Legis. J. 502 (1997)
Genetic Discrimination: Legislation Required to Keep Genetic Secrets

handle is hein.journals/sethlegj21 and id is 508 raw text is: GENETIC DISCRIMINATION: LEGISLATION REQUIRED TO KEEP GENETIC SECRETS Burk Burnett* Table Of Contents I. INTRODUCTION .................................... 502 II. THE GENETIC REVOLUTION AND FEDERAL PROTECTION ....................................... 510 A. Genetic Revolution ............................... 510 B. Inadequate Federal Protection ................... 515 III. PROPOSED MODEL FOR FEDERAL LEGISLATION ....................................... 520 IV. STATE AND FEDERAL LEGISLATIVE ACTION ..... 523 A. New Jersey's Genetic Privacy Act................ 525 B. Federal Regulations of Genetic Information ...... 530 V. CONCLUSION ....................................... 533 VI. APPENDIX ........................................... 534 Discoveries of genetic information could be the civil rights bat- tie of the next century.1 I. Introduction The results of the genetic test were clear: they indicated that Ms. Kathleen Ingram's fetus would be born with cystic fibrosis.2 Despite this knowledge, Ms. Ingram and her husband decided to carry the baby to term.3 Unfortunately, Ms. Ingram's health main- * B.S., CriminalJustice and Psychology, University of Delaware (1991);J.D., Seton Hall University School of Law anticipated,June 1998. The author would like to thank Professor John V. Jacobi for his helpful comments. 1 142 CONG. REc. H2845 (daily ed. Mar. 26, 1996) (statement of Rep. Steams). A California woman died from an inherited heart defect and as a result, her surviving spouse and children were denied family medical coverage on the basis that the chil- dren may carry the same defect. Id. at H2844. 2 SeeJudy Berlfein, Health Care Trap, LA. TimEs, Apr. 30, 1990, at 2. The Ingrams utilized genetic technology which allowed them to discover whether the fetus pos- sessed the defective gene. Id. 3 See id. This was the Ingrains' second child. Their first baby had also been born with cystic fibrosis. Id. Cystic fibrosis is a disorder that causes mucus to clog the lungs and results in difficulty in breathing. Id. Because cystic fibrosis is a hereditary disease,

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