State of NH Clinical Genetics

Useful Genetics Resources Nation Wide

 

BIBLIOGRAPHY


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2 Clayton, Ellen Wright, et al. Journal of the American Medical Association; Informed Consent for Genetic Research on Stored Tissue Samples. 12/13/95. Vol. 274, No. 22

3 Skolnick, Andrew A. Journal of American Medical Association; Opposition to Law Officers Having Unfettered Access to Medical Records. 1/28/98.

4 Shapiro, Harold T. Science; Ethical and Policy Issues of Human Cloning. 7/11/97. Vol. 277.

5 Lewontin, Richard. New York Review; The Confusion Over Cloning. 10/23/97.

6 National Bioethics Advisory Commission. Cloning Human Beings: Report and Recommendations. 6/97.

7 Associated Press. House Committee Adopts Bills Banning Human Cloning. 1/20/98.

8 Christoff, Chris. Detroit Free Press; State House to Take Up Cloning Bills. 1/21/98.

9 Wright, Mary V. Congressional Research Service; Cloning: Chronology of Events, 1997-1998. 1/27/98.

10 Clinton, William. Radio Address by the President to the Nation. 1/10/98.

11 Chen, Edwin. Las Vegas Review Journal; President Urges Ban on Cloning. 1/11/98.

12 Tobler, Laura. State Legislatures; The Cloning Conundrum. 10-11/98. Vol. 23, pp.36-37.

13 Congressional Quarterly; House Senate Panel Approves Anti-Cloning Measure. 8/2/97. Vol. 55, pp 1875-76.

14 Congressional Quarterly; Most Adopting Cautious Approach as Congress Confronts Cloning. 3/15/97. Vol 55, pp 641-42.

15 National Journal; Double Trouble. 9/20/97. Vol. 29, pp 1830-32.

16 Clinton, William. White House Press Release; Remarks by the President on Cloning. 3/4/97.

17 Clinton, William. White House Press Release; Memorandum for the Heads of Executive Departments and Agencies; 3/4/97.

18 Stitch-Coleman, Irene. Congressional Research Service; Cloning: Where Do We Go From Here? 12/2/97.

19 Shalala, Donna. CBS, Inc.; Face the Nation Transcript. 1/11/98.

20 Lerner, Barbara. Detroit News; Hold Back the Dawn Approach Won't Work on Human Cloning. 2/10/98.

21 Kileen, Anthony. Testimony Before the Health Policy Committee. 1/20/98.

22 Wade, Nicholas. New York Times; Cell's Life Stretched in Lab. 1/98.

23 Wade, Nicholas. New York Times; With No Other Dollys Yet, Cloning Report Draws Critics. 1/30/98.

24 Johnson, D. B. Detroit News; The Cloning Panic. 2/8/98.

25 Christoff, Chris. Detroit Free Press; State Senate Decides to Ban Human Cloning and Fine Those Who Try. 4/29/98.

26 Heilein, Gary. Detroit News; Anti-Cloning Bills Near Final Passage. 4/15/98.

27 Kolata, Gina. New York Times; In Big Advance in Cloning, Biologist Create 50 Mice. 7/23/98.

28 Reilly, Philip R. Journal of Law Medicine and Ethics; Panel Comment: The Impact of Genetic Privacy Act on Medicine. 1995. 23:378-81.

29 Farkas, Daniel, et al. Arch. Pathol. Lab. Med.; Specimen Collection and Storage for Diagnosis Molecular Pathology Investigation. 6/96. Vol. 120.

30 Muralidharan, Kasinathan and Wemmer, Christen. Biotechniques; Transporting and Storing Field-Collected Specimens for DNA Without Refrigeration for Subsequent DNA Extraction. 1994. Vol. 17, No. 3.

31 Steinberg, Karen K., et al. Epidemiology Reviews; DNA Banking in Epidemiologic Studies. 1997. Vol. 19, No. 1.

32 Grody, Wayne W. Molecular Pathology; Molecular Pathology, Informed Consent and the Paraffin Block. 1995. Vol. 4, No. 3.

33 Reilly, Philip R., et al. Nature Genetics; Ethical Issues in Genetic Research: Disclosure and Informed Consent. 1/97. Vol. 15.

34 Veatch, Robert M. New England Journal of Medicine; Consent, Confidentiality and Research. 3/20/97. Vol. 336, No. 12.

35 Andrews, Lori. ABA Journal; Body Science. 4/97.

36 Elias, Sherman and Annas, George J. Sounding Board; Generic Consent for Genetic Screening. Vol. 330, No. 22.

37 Marshall, Eliot, Science; Policy on DNA Research Troubles Tissue Bankers. 1/26/97. Vol. 271.

38 Stephenson, Joan. Journal of the American Medical Association; Pathologists Enter Debate on Consent for Genetic Research on Stored Tissue. 2/21/96. Vol. 275, No. 7

39 Kelsey, Karl T., et al. Journal of the American Medical Association; Letters to the Editor on Informed Consent for Genetic Research. 4/10/96. Vol. 275, No. 14.

40 Gold, R. L., et al. American Journal of Medical Genetics; Model Consent Forms for DNA Linkage Analysis and Storage. 1993. Vol. 47:1223-24.

41 Lippman, Amy, et al. American Journal of Public Health; Letters to the Editor: Nonconsensual Participation in Genetic Studies. 7/96. Vol. 86, No. 7.

42 Geller, Gail, et al. Journal of the American Medical Association; Genetic Testing for Susceptibility to Adult-Onset Cancer. 5/14/97. Vol. 277, No. 18.

43 American Society of Human Genetics; Statement on Informed Consent for Genetic Research. 1996. 59:471-74.

44 Strohman, Richard C. Perspectives in Biology and Medicine; Ancient Genomes, Wise Bodies, Unhealthy People: Limits of a Genetic Paradigm in Biology and Medicine. 1993. Vol. 37, No. 1.

45 Wilforn, Benjamin S. and Nolan, Kathleen. Journal of the American Medical Association; National Policy Development for the Clinical Application of Genetic Diagnostic Technologies. 11/22/93. Vol. 270, No. 24.

46 Chabner, Bruce, et al. and Livingston, David. Journal of the American Medical Association; Editorials: Screening Strategies for Cancer, and Genetics is Coming to Conchology. 5/14/97.

47 Francis, Leslie P. Utah Law Review; Recent Developments in Genetic Diagnosis: Some Ethical and Legal Implications. 1986. Vol. 483, No. 3.

48 Lewontin, Richard. New York Review; Billions and Billions of Demons. 1/9/97.

49 Kahn, Patricia. Science; Coming to Grips with Genes and Risk. 10/25/96. Vol. 274.

50 Grunewald, K., et al. Annals of Hematology; Molecular Genetic Analysis of DNA Obtained from Fixed, Air Dried or Paraffin Embedded Sources. 1991. 62:108-14.

51 Evenson, A. J. Lansing State Journal; Test Sow Seeds of Hope, Fear. 2/1/98.

52 Tang, Min-Xin, et al. Journal of the American Medical Association; The APOE-4 Allele and the Risk of Alzheimer Disease Among African Americans, Whites and Hispanics. 3/11/98. Vol. 279, No. 10.

53 Kukull, Walter A. and Martin, George M. Journal of the American Medical Association; APOE Polymorphisms and Late-Onset Alzheimer Disease. 3/11/98. Vol. 279, No. 10.

54 Abati, Andrea and Loitta, Lance A. Cancer; Looking Forward in Diagnostic Pathology. 7/1/96. Vol. 78, No. 1.

55 Billings, Paul R., et al. American Journal of Human Genetics; Discrimination as a Consequence of Genetic Testing. 1992. 50:476-82.

56 Nature. 11/21/96. Vol. 384.

57 Robertson, John A. AAAS-ABA the Genome, Ethics; Legal Issues in Genetic Testing. 1992.

58 Severo, Richard. New York Times; Screening of Blacks by DuPont Sharpens Debate on Gene Tests. 2/4/80.

59 Weiss, Rick. Washington Post; Academics Warn That Misunderstanding of Genetics Could Fuel Racism in U.S. 2/20/95.

60 King, Patricia. Gene Mapping Using Law and Ethics; The Past as Prologue: Race, Class and Gene Discrimination. 1992.

61 Friend, Tim. USA Today; Researchers Uncover Genetic Discrimination. 4/1/97.

62 Natowicz, Marvin R., et al. American Journal of Human Genetics; Genetic Discrimination and the Law. 1992. 50:465-75.

63 Lapham, E. Virginia, et al. Science; Genetic Discrimination: Perspectives of Consumers. 10/25/96. Vol. 274.

64 Greely, Henry T. Health Insurance, Employment Discrimination and the Genetics Revolution.

65 Holtzman, Neil A. and Rothstein, Mark A. American Journal of Human Genetics; Invited Editorial: Eugenics and Genetic Discrimination. 1992. 50:457-59.

66 Natowicz, Marvin R., et al. American Journal of Human Genetics; Genetic Conditions and the Scope of the Americans with Disabilities Act. 1993. 53:534-35.

67 Quaid, Kimberly A. and Morris, Michael. American Journal of Medical Genetics; Reluctance to Undergo Predictive Testing: The Case of Huntington Disease. 1993. 45:41-45.

68 Mehlman, Maxwell J. American Journal of Human Genetics; The Need for Anonymous Genetic Counseling and Testing. 1996. 58:393-97.

69 Alper, Joseph S. and Natowicz, Marvin R. American Journal of Human Genetics; Genetic Discrimination and the Public Entities and Public Accommodations Titles of the Americans with Disabilities Act. 1993. 53:26-32.

70 Natowicz, Marin R., et al. American Journal of Human Genetics; Genetic Discrimination and the Americans with Disabilities and Other Letters to the Editor. 1992. 51:895-97.

71 Holtzman, Neil A and Rothstein, Mark A., et al. American Journal of Human Genetics; Letters to the Editor: Genetic Conditions and the Scope of the Americans with Disabilities Act. 1992.

72 Pharmaceutical Research and Manufacturers of America; Pending State Legislative Proposals to Prohibit Genetic Discrimination in Health Insurance and/or Employment. 10/14/97.

73 Coxe, Mattie Fincher. American Journal of Human Genetics; Letter to the Editor: Hereditary Infertility: Grounds for Genetic Discrimination? 1993. 53:535-36.

 

74 Evenson, A. J. Lansing State Journal; New Discoveries Bring New Forms of Discrimination. 2/1/98.

75 Equal Employment Opportunity Commission. EEOC Releases New ADA Guidance Defining "Disability." 3/15/95.

76 Gollaher, David. New York Times; The Paradox of Genetic Privacy. 1/7/98.

77 Clayton, Ellen Wright and Rothstein, Mark A. American Journal of Human Genetics; Letters to the Editor: Anonymous Genetic Testing: Reply to Mehlman et al. 1996. 59:1169-70.

78 Waldman, Lois C., et al. Congress Monthly; Genetic Diseases & the Jewish Community. Jul/Aug 98.

79 Nature; New Jersey Outlaws Genetic Discrimination. 11/21/96. Vol. 384.

80 Greenhouse, Linda. New York Times; Supreme Court Considers if Disabilities Act Covers HIV Case. 3/31/98.

81 Amicangelo, JoAnn. Health Care Weekly Review; Legislators Work Proactively to Avoid Genetic Discrimination. 3/18/98.

82 Kolata, Gina. New York Times; Genetic Testing Falls Short of Public Embrace. 3/27/98.

83 Associated Press. Ann Arbor News; Genetic Discrimination Laws Falter, Many Suffer. 4/12/98.

84 Payne, Melanie. Daily News; Experts Worry Genetic Testing Could Lead to Discrimination. 4/26/98.

85 Wolf, Susan M. Journal of Law, Medicine and Ethics; Beyond "Genetic Discrimination:" Toward the Broader Harm of Geneticism. 1995. Vol. 23:345-53.

86 Leary, Warren E. New York Times; Using Gene Tests to Deny Jobs is Ruled Illegal. 4/8/95.

87 Lancet; Have You Had a Gene Test? 1/20/96. Vol. 347.

88 Lowden, Billings, et al. American Journal of Human Genetics; Editorials on Genetic Discrimination. 1992. 51:901-903.

89 Greenhouse, Linda. New York Times; Court Says Law Bars Discrimination Against HIV-Infected. 6/26/98.

90 Rothenberg, Karen, et al. Science; Genetic Information and the Workplace: Legislative Approaches and Policy Challenges. 3/21/97. Vol. 275.

91 Michigan Department of Education, Michigan Curriculum Framework Content Standards & Benchmarks, July 1995.

92 Rothstein, Mark, Houston Law Review, Genetic Discrimination in Employment and the Americans with Disabilities Act, 1992. Vol.29:23-84.

93 Weiss, Rick, Washington Post, Gene Discrimination Barred in Workplace, 4/7/95.

94 Billings, Paul and Beckwith, Jon, Trends in Genetics, Genetic Testing in the Workplace: A View from the USA, 6/92. Vol. 8, No. 6.

95 AMA Council on Ethical and Judicial Affairs, Journal of the American Medical Association, Use of Genetic Testing by Employers, 10/2/91. Vol. 226, No. 13.

96 Vineis, Paolo and Schulte, Paul A., J. Clin Epidiemol, Scientific and Thical Aspects of Genetic Screening of Workers for Cancer Risk: The Case of the N-Acetyltransferase, 1995. Vol. 48, No. 2:189-97.

97 Andrews, Lori B. And Jaeger, Ami S., American Journal of Law & Medicine, Confidentiality of Genetic Information in the Workplace, 1991. Vol. XVII, Nos. 1 & 2.

98 Wertz, Dorothy C., et al., Journal of the American Medical Association, Genetic Testing for Children and Adolescents, 9/21/94. Vol. 272, No. 11.

99 Marshall, Eliot, Science, The Genome Program's Conscience, 10,96. Vol. 274.

100 Painter, Kim, USA Today, Doctors Have Prenatal Test for 450 Genetic Diseases, 8/15/97.

101 Painter, Kim, USA Today, More Tests are Genetic Time Bombs, 8/15/97.

102 Journal of the American Medical Association, Prognosis, Diagnosis, or Who Knows? Time to Learn What Gene Tests Mean, 1/11/95. Vol. 272, No. 2.

103 NIH Task Force on Genetic Testing, Federal Register, Proposed Recommendations of the Task Force on Genetic Testing: Notice of Meeting and Request for Comment, 1/30/97. Vol. 62, No. 20.

104 Kadlec, Josef V. And McPherson, Richard A., Clinics in Laboratory Medicine, Ethical Issues in Screening and Testing for Genetic Diseases, 12/95. Vol. 15, No. 4.

105 Groopman, Jerome, New Yorker, Decoding Destiny, 1998.

106 The National Human Genome Research Institute, NCHGR-DOE Guidance on Human Subjects Issues in Large-Scale DNA Sequencing, 8/23/96.

107 NIH Task Force on Genetic Testing, www.nhgri,nih.gov/ELSI/TFGT_final/, Promoting Safe and Effective Genetic Testing in the U.S.: Final Report, 9/97.

108 Nowak, Rachel, Science, Genetic Testing Set for Takeoff, 7/22/94. Vol. 265.

109 Andrews, Lori B., et.al, National Academy Press, Washington D.C., Assessing Genetic Risks: Implications for Health and Social Policy, 1994.

110 Cellmark Diagnosis, DNA Fingerprinting: The Future of Identification.

111 Nowak, Rachel, Science, Forensic DNA Goes to Court with OJ, 9/94. Vol. 265.

112 Marshall, Eliot, Science, Academy's About-Face on Forensic DNA, 5/10/96. Vol 272.

113 Glaberson, William, New York Times, DNA Cuts Both Ways, 4/14/96.

114 Williams, Michelle, Daily Record, New Form of DNA Testing Debuts in U.S. Prosecution of Murder-Rape, 8/30/96.

115 Associated Press, New York Times, A new DNA Test Helps Win a Conviction, 9/5/96.

116 Williams, Corey and Nord, Thomas, Detroit News, DNA Was Mitchelle's Downfall: Jury Quickly Finds Man guilty of Ann Arbor Rapes, Murder, 6/15/95.

117 Shepardson, David, Detroit News, Suspects No More, They Want Blood Back, 7/24/95.

118 Shepardson, David, Detroit News, Ann Arbor Returning Blood Samples to 160 Blacks Suspected in Rape Case, 1/17/96.

119 Shepardson, David, Detroit News, Judge Orders Crime Lab to Return Man's Blood Records, 5/2/96.

120 McEwen, Jean, American Journal of Human Genetics, Forensic DNA Data Banking by State Crime Laboratories, 1995. 56:1487-92.

121 Brown, Phyllida, New Scientist, Lawyers Look to Human Genetics to Prove HIV "Guilt" Using Genetics in HIV Legal Cases, 7/11/92. Vol. 135, No. 1829:35.

122 Trial, Protecting Genetic Privacy, 8/94.

123 Lempert, Richard, Genetica, The Honest Scientist's Guide to DNA Evidence, 1995. 96:119-24.

124 McEwen, Jean E. and Reilly, Philip R., American Journal of Human Genetics, A Review of State Legislation on DNA Forensic Data Banking, 1994. 54:941-58.

125 Evenson, A.J., Lansing State Journal, Man's Genetic Records Spark Big Debate, 2/1/98.

126 Cohen, Laurie P., Wall Street Journal, Innovative DNA Test Is an ID Whose Time has Come for the FBI, 12/19/98.

127 Cobbs, Liz, Ann Arbor News, Legal Battle Ends: 160 Can Get DNA Documents Back, 12/17/97.

128 Butterfield, Fox, New York Times, DNA Test Absolves Sam Shepard of Murder, Lawyer Says, 3/5/98.

129 Goldberg, Carey, New York Times, DNA Databanks Giving Police a Powerful Weapon, and Critics, 2/19/98.

130 Zurer, Pamela, C&EN, DNA Profiling Fast Becoming Accepted Tool for Identification, 10/10/94.

131 Scheck, Barry, American Journal of Human Genetics, DNA Data Banking: A Cautionary Tale, 1994. 54:931-33.

132 National Commission on the Future of DNA Evidence, Proceedings, 6/8/98.

133 US Department of Energy, Human Genome News, Human Genome News, 1/6/97. Vol. 8, Nos. 3&4.

134 Berg, Paul and Singer, Maxine F., Proc. Natl. Academy of Sciences, USA, The Recombinant DNA Controversy: Twenty Years Later, 9/95. Vol. 92, 9011-13.

135 Sing, Charles F., et.al., Ciba Foundation Symposium 197, Genetic Architecture of Common Multifactorial Diseases, 1996.

136 Human Genome News, Colloquy Explore Genetic Predisposition, 7/95. 7(2):7.

137 Nature Genetics, Simple Minds and Complex Traits, 6/96. Vol. 13.

138 Summers, Kim, Human Mutation, Relationship between Genotype and Phenotype in Monogenic Diseases: Relevance to Polygenic Diseases, 1996. 7:283-93.

139 Wachbroit, Robert S., American Journal of Medical Genetics, Distinguishing Genetic Disease and Genetic Susceptibility, 1994. 53:236-40.

140 Kahn, Patricia, Science, Gene Hunters Close in on Elusive Prey, 3/8/96. Vol. 271.

141 Barsh, Gregory S., Trends in Genetics, The Genetics of Pigmentation: From Francy Genes to Complex Traits, 8/96. Vol. 12, No. 8.

142 Neumann, Paul E., et al, Nature Genetics, Multifactorial Inheritance of Neural Tube Defects: Localization of the Major Gene and Recognition of Modifiers in ct Mutant, 4/94. Vol. 6.

143 Human Molecular Genetics, Genetic Testing in Individuals and Populations (Chapter 16 and part of Chapter 18).

144 Genome Technology & Reproduction: Values, Case Law Related to Genetics Testing issues (Draft).

145 Benford, Gregory, Proc. Natl. Acad. Sci. USA, Saving the "Library of Life", 11/92. Vol. 89, pp. 11098-101.

146 Prinz, M., et al, International Journal of Legal Medicine, DNA Typing of Urine Samples Following Several years of Storage, 1993. 106:75-9.

147 Huckenbeck, W. and Bonte, W., International Journal of Legal Medicine, DNA Fingerprinting of Freeze-Dried Tissues, 1992. 105:39-41.

148 Reichel, William, Experimental Gerontology, Survey Research Guiding Public Policy Making in Maryland: The Case of Alzheimer's Disease...and Related Disorders, 1986. Vol. 21, pp. 439-448.

149 Abelsen, Reed, New York Times, Charities Use For-Profit Units to Avoid Disclosing Finances, 2/9/98.

150 Petersen, Melody, New York Times, New Jersey Entrepreneur is Cashing In on Inmates, 2/9/98.

151 The National Human Genome Research Institute, NIH and Hopkins Establish a New Center to Study Genetic and Environmental Origins of Common Disorders.

152 Ulrich, Thomas, Time, A Dark Inheritance, Fall 1997.

153 Reuter, Detroit News, British Teacher Finds Long-Lost Relative--from 9,000 Years Ago, 3/9/97.

154 Strazella, Michael P. and Welsh, Alyson J., Laboratory Medicine, Microscope on Washington: Congress and States Delve Into Genetic Concerns, 3/98. Vol. 29, No. 3.

155 Wade, Nicholas, New York Times, Impresario of the Genome Looks Back with Candor, 4/7/98.

156 Wade, Nicholas, New York Times, Scientist's Plan: map All DNA Within 3 Years, 5/10/98.

157 Doyle, Rebecca, University Record, State's Genetic Privacy Commission Faces Delicate Task, 3/18/98.

158 Wade, Nicholas, New York Times, International Gene Project Gets Lift, 5/17/98.

159 National Surgical Adjuvant Breast and Bowel Project, Coast to Coast, Special Issue on Genetics, Winter 1998. Vol. 5, No. 1.

160 Rifkin, Jeremy, Will Genes Remake the World?

161 Kolata, Gina, New York Times, Researchers Report Success in Method to Pick Baby's Sex, 9/9/98.

162 Maddox, John, Nature, The Case for the Human Genome, 7/4/91. Vol. 352.

163 Pollack, Andrew. New York Times; Gene Therapy's Focus Shifts from Rare Illnesses. 8/4/94.

164 Kolata, Gina. New York Times; Pushing the Boundaries of Reproductive Biology. 7/24/98.

165 Strohman, Richard. Nature Biotechnology; The Coming Kuhnian Revolution in Biology. 3/97. Vol. 15.

166 Streelman, Jeffrey Todd and Stephen, Karl A. Nature Biotechnology; Paradigms and the Rise (or Fall?) of Molecular Biology. 8/97. Vol. 15.

167 Bains, William. Nature Biotechnology; Should You Hire an Epistemologist? 5/97. Vol. 15.

168 Rothenberg, Karen H., et al. Journal of Law, Medicine & Ethics; Genetic Information and Health Insurance: State Legislative Approaches. 1995. 23:312-19.

169 Beecham, Linda. BMJ; Genetic Testing Has Little Effect on U.S. Health Insurance. 11/21/92. Vol. 305.

170 Symposium on Genetic Testing and Insurance. Journal of Insurance Regulation; State Positions on the Issue of Genetic Testing for Insurance Coverage.

171 Stipe, Suzanne E. Best's Review; Genetic Testing Battle Pits Insurers Against Consumers. 8/96

172 NAIC, Health Information & Privacy Working Group of the Regulatory Framework (B) Task Force, 1997.

173 Pear, Robert. New York Times; Democrats Begin Effort to Legislate Patient's Bill of Rights. 4/1/98.

174 Daniels, Norman. Justice and the Human Genome Project; The Genome Project, Individual Differences, and Just Health Care. 1994

175 Alpert, Sherri. Workgroup for Electronic Data; Medical Records, Privacy and Health Care Reform (Report to the Secretary of the U.S. Department of Health and Human Welfare). 7/92.

176 Abbot, Alison. Nature; Complexity Limits the Powers of Prediction. 2/1/96. Vol.379.

177 Hudson, Kathy, et al. Science; Genetic Discrimination and Health Insurance: An Urgent Need for Reform.

178 NIH Task Force on Genetic Information and Insurance. NIH Publication No. 93-3686; Report of the Task Force on Genetic Information and Insurance. 5/10/93.

179 Masood, Eshan. Nature; Gene Tests: Who Benefits from Risk? 2/96. Vol. 379.

180 Birmingham, Karen. Nature Medicine; Insurers Admit Genetic Discrimination. 7/97. Vol. 3, No. 7.

181 Glazier, Alexandra K. American Journal of Law & Medicine; Genetic Predispositions, Prophylactic Treatments and Private Health Insurance: Nothing Is Better...Pair of Genes. 1997. Vol XXIII, No. 1.

182 Ad Hoc Committee on Genetic Testing/Insurance Issues. American Journal of Human Genetics; Background Statement: Genetic Testing and Insurance. 1995. 56:327-31.

183 Murray, Thomas H. Hastings Center Report; Genetics and the Moral Mission of Health Insurance. 11/92.

184 Kass, Nancy E. Hastings Center Report; Insurance for the Insurers: The Use of Genetic Tests. 11/92.

185 Advisory Commission on Consumer Protection and Quality in Health. Report to the President of the U.S.; Consumer Bill of Rights and Responsibilities. 11/97.

186 Paltrow, Scot J. Wall Street Journal; How Insurance Firms Beat Back an Effort for Stricter Controls. 2/5/98.

187 Gostin, Lawrence O. Annals of Internal Medicine; Health Care Information and the Protection of Personal Privacy: Ethical and Legal Considerations. 10/15/97. Vol. 127, No. 8.

188 USA Today, 1 in 6 Uninsured in USA, 9/30/98.

189 Matthews, Merrill. USA Today; Government Rules Are to Blame. 9/30/98.

190 Stafford, Nicole. Health Care Weekly Review; Genetic Testing Bills Take Aim at Insurance Discrimination. 9/9/98.

191 Pear, Robert. New York Times; Clinton to Punish Insurers Who Deny Health Coverage. 7/7/98.

192 Pear, Robert. New York Times, Sweeping New Rules are Set Out to Protect People on Medicare, 6/23/98.

193 Pokorski, Robert J. American Journal of Human Genetics; Insurance Underwriting in the Genetics Era. 1997. 60:205-16.

194 ACLU Subcommittee on Privacy Legislation. Genetic Test Information and Insurance: Confidentiality Concerns and Recommendations.

195 Ostrer, Harry, et al. American Journal of Human Genetics; Insurance and Genetic Testing: Where Are We Now? 1993. 52:565-77.

196 McEwen, Jean E., et al. American Journal of Human Genetics; A Survey of Medical Directors of Life Insurance Companies Concerning Use of Genetic Information. 1993. 53:33-45.

197 McEwen, Jean E., et al. American Journal of Human Genetics; A Survey of State Insurance Commissioners Concerning Genetic Testing and Life Insurance. 1992. 51:785-92.

198 Annas, George J., et al, Journal of Law, Medicine & Ethics; Drafting the Genetic Privacy Act: Science, Policy, and Practical Considerations, 1995. Vol 23:360-66.

199 McEwen, Jean E. and Reilly, Philip R. American Journal of Human Genetics; State Legislative Efforts to Regulate Use and Potential Misuse of Genetic Information. 1992. 51:637-47.

200 Journal of NIH Research; Forget Washington: State Laws Threaten to Restrict Genetic Research. 11/97. Vol. 9.

201 Genome Technology & Reproduction: Values; Review of the 1997 Genetics Legislation. 1997.

202 Pharmaceutical Research and Manufacturers of America (PhRMA); Comparison of Confidentiality-Related Draft Bills with PhRMA Principles. 10/12/97.

203 Pharmaceutical Research and Manufacturers of America (PhRMA); State Legislation on Confidentiality of Patient-Identifiable Medical Information (1997). 9/4/97.

204 Law & Policy Reporter; N.J. Governor Vetoes Genetic Privacy Act. 10/96.

205 United Press International. Mayor Young and Plaintiff Agree to Blood Tests in Paternity Case. 3/16/89.

206 Chicago Tribune. Test Points to Detroit Mayor as Boy's Dad. 5/13/89.

207 Chicago Sun-Times. DNA Tests in Paternity Cases Raise New Issues. 4/12/92.

208 Annas, George J. Journal of the American Medical Association; Privacy Rules for DNA Databanks. 11/93. Vol. 27, No. 19.

209 Roche, Patricia (Winnie), et al. The Genetic Privacy Act: A Proposal for National Legislation. 1996.

210 Horton, Nicholas. Privacy, Problems, Promises.

211 Nature; Whose Right to Genetic Knowledge? 2/1/96. Vol. 379.

212 Early, Charles L. and Strong, Louise C. American Journal of Human Genetics; Certificates of Confidentiality: A Valuable Tool for Protecting Genetic Data. 1995. 57:727-31.

213 Holtzman, Neil A. Journal of Law, Medicine & Ethics; Panel Comment: The Attempt to Pass the Genetic Privacy Act in Maryland. 1995. 23:367-70.

214 Association of American Medical Colleges. Health Data Security, Patient Privacy, and the Use of Archival Patient Materials in Research. 2/27/97.

215 Pharmaceutical Research and Manufacturers of America (PhRMA). Principles of Maintaining Confidentiality of Patient-Identifiable Medical Information. 2/13/97.

216 Pharmaceutical Research and Manufacturers of America (PhRMA). Statement of the PhRMA on the Confidentiality of Medical Information Submitted to the Senate and Human Resources. 10/28/97.

217 Pharmaceutical Research and Manufacturers of America (PhRMA), Testimony of Judith H. Bello, Exec. V. P. Of the PhRMA, Before the Task Force on Health...and Genetic Privacy, 7/22/97.

218 PR Newswire Association, Inc., People Must be Treated with Respect: BIO Calls for Strong Protections for Genetic Information, 10/3/96.

219 Hymowitz, Carol, Wall Street Journal, Psychotherapy Patients Pay a Price for Privacy, 1/22/98.

220 Evenson, A. J., Lansing State Journal, Genetic Privacy: "It's a Big Fear -- A Justifiable Fear," 2/1/98.

221 Evenson, A. J., Lansing State Journal, Genetic Testing Brings Up Privacy Concerns, 2/1/98.

222 Hannig, Vickie L., et al, American Journal of Medical Genetics, Whose DNA Is It Anyway? Relationships Between Families and Researchers, 1993. Vol. 47:257-60.

223 Nature, House Backs Curb on Genetic Information, 4/4/96, Vol. 380.

224 Lin, Michael, American Journal of Law & Medicine, Conferring a Federal Property Right in Genetic Material; Stepping into the Future with the Genetic Privacy Act, 1996. Vol. XXII No. 1.

225 Lowrance, William, Privacy and Health Research: A Report to the US Secretary of Health and Human Services, May 1997.

226 Troy, Edwin S. Flores, Journal of Law, Medicine & Ethics, The Genetic Privacy Act: An 6nalysis of Privacy and Research Concerns, 1997. 25: 265-72.

227 Human Genome News, ELSI Working Group Explores Privacy Issue, July 1994.

228 Stolberg, Sheryl Gay, New York Times, Concern Among Jews Is Heightened as Scientists Deepen Gene Studies, 4/22/98.

229 Beatty, Sally, Wall Street Journal, Reader's Digest Targets Patients by Their Ailments, 4/17/98.

230 Davis, Robert, USA Today, Private Medical Records Make Public Rounds, 4/27/98.

231 Gostin, Lawrence O., et al, Journal of the American Medical Association, The Public Health Information Infrastructure, 6/26/96. Vol. 275, No. 24.

232 Buchanan, Allen, An Ethical Framework for Biological Samples Policy.

233 Gavison, Ruth, Yale Law Journal, Privacy and the Limits of Law, 1/80, Vol. 89, No. 3.

234 Warren, Samuel D. And Brandeis, Louis D., Harvard Law Review, The Right to Privacy, 12/15/1890. Vol. IV, No. 5.

235 Konvitz, Milton R., Privacy and the Law: A Philosophical Prelude.

236 Supreme Court, Cruzan v. Director, Missouri Dept. of Health, 1990.

237 Supreme Court, Whalen, Commissioner of Health of New York v. Roe, 1977.

238 Richardson, Linda, New York Times, State's List of H.I.V. Patients Raises Privacy Issues, 5/29/98.

239 Andre, Judith, The Journal of Value Inquiry, Privacy as a Value and as a Right, 1986. Vol. 20, 309-317.

240 American Psychologist, Ethical Principle of Psychologists, 6/81. Vol. 36, No. 6, 633-38.

241 American Medical Association. Reports - Current Issues to be Debated 6-15-98. 1998.

242 Shalala, Donna E. Testimony Before the Senate Committee on Labor and Human Resources. 9/11/97.

243 Shalala, Donna E. Confidentiality of Individually-Identifiable Health Information. 9/11/97.

244 New York Times; Privacy in the Digital Age. 7/6/98.

245 Healy, Bernadine. New York Times; Hippocrates vs. Big Brother. 7/24/98.

246 Nature Genetics; Privacy Matters. 7/98. Vol. 19, No. 3.

247 Stolberg, Sheryl Gay. New York Times; Health Identifier for all Americans Runs Into Hurdles. 7/20/98.

248 Meehan, Chris. Grand Rapids Press; Genetic Testing More Important than Privacy, Blind Vendor Says. 4/22/98.

249 Evenson, A. J. Lansing State Journal; Public Gets a Voice in Genetics Debate. 4/22/98.

250 Wahlberg, David. Ann Arbor News; Genetic Privacy Debated. 5/20/98.

251 Wahlberg, David. Ann Arbor News; Rules Suggested for Genetic Testing. 5/12/98.

252 Spencer, Carrie. Saginaw News; Who Has the Right to Read Your DNA? 5/13/98.

253 Custodio, Philip. Advance Newspapers; Forum Tackles Risks of DNA Research. 5/6/98.

254 Traverse City Record-Eagle; Here's a Chance to Guard the Ultimate Type of Privacy. 5/98.

255 Evenson, A. J. Lansing State Journal; Residents Voice Concerns About Genetic Privacy. 6/17/98.

256 Alcid, Arthur. State News; Forum Stirs Genetic Debate. 6/17/98.

257 Merz, Jon F., et al. Journal of Investigative Medicine; Use of Human Tissues in Research: Clarifying Clinician and Researcher Roles and Information Flows. 6/97. Vol 45, No. 5.

258 American College of Medical Genetics. American Journal of Human Genetics; Statement on Storage and Use of Genetic Materials. 1995. 57:1499-1500.

259 Knoppers Bartha Maria and Laberge, Claude M. Journal of the American Medical Association; Research and Stored Tissues. 12/13/95. Vol. 274, No. 22.

260 Clayton, Ellen Wright. Journal of Law, Medicine & Ethics; Panel Comment: Why the Use of Anonymous Samples for Research Matters. 1995. 23:375-77.

261 Fisher, Lawrence M. New York Times; Novartis Plans to Research Disease Genes. 4/8/98.

262 Draft Paper for the National Bioethics Advisory Commission.

263 Therrell, Bradford L., et al. Biomedical and Molecular Medicine; Guidelines for the Retention, Storage and Use of Residual Dried Blood Spot Samples. 4/96. Vol. 57, No. 2.

264 Hiller, Elaine H., et al. American Journal of Public Health; Public Participation in Medical Policy-Making: The Examples of Newborn Screening Programs in the US. 8-97. Vol. 87, No. 8.

265 Holtzman, Neil A. American Journal of Public Health; Editorial: Genetic Screening and Public Health. 8/97. Vol. 87, No. 8.

266 Clayton, Ellen Wright. Pediatrics; Issues in State Newborn Screening Programs. 10/92. Vol. 90, No. 4.

267 McCabe, Edward R. B., et al. Human Genetics; DNA Microextraction from Dried Blood Spots on Filter Paper Blotters: Potential Applications to Newborn Screening. 1987. 75:213-16.

268 Jinks, David C., et al. Human Genetics; Molecular Genetic Diagnosis of Sickle Cell Disease Using Dried Blood Specimens on Blotters Used for Newborn Screening. 1989. 81:363-6.

269 Annas, George J. American Journal of Public Health; Mandatory PKU Screening: The Other Side of the Looking Glass. 12/82. Vol 72, No. 12.

270 Pelias, Mary Z. Southeastern Regional Genetics Group; Newborn Screening-New Dilemmas. Winter 1996.

271 McEwen, Jean E. and Reilly, Philip R. American Journal of Human Genetics; Stored Guthrie Cards as DNA "Banks." 1994 55:196-200.

272 Therrell, Brad L., et al. Screening; U.S. Newborn Screening System Guidelines: Statement of the Council of Regional Networks for Genetic Services. 1992. 135-147.

273 Council of Regional Networks (CORN). CORN, Cornell Medical College; National Newborn Screening Report-1991. July 1994.

274 Chapman, Barbara. Cap Today; Early Prenatal Screening Matures. 9/98. vol. 12, No. 9.

275 Morrison, P. J., et al. Letter to the Editor: DNA Storage and Duplicate Sampling: Lessons Learned from Testing for Huntington's Disease.

276 G Ciusti, Alan M. and Budowle, Bruce. Journal of Forensic Sciences; Effect of Storage Conditions on RFLP Analysis of DNA Bound to Positively Charged Nylon Membranes. 3/92. Vol. 37, No. 2, pp. 597-603.

277 Jorgensen, Bjarne R. and Therkelsen, A. J. Prenatal Diagnosis; A Routine Method for Storing Lymphocytes for Repeated Isolation of DNA. 1988. Vol 8, 691.

278 Cushwa, William T. and Medrano, Juan F. Biotechniques; Effects of Blood Storage Time and Temperature on DNA Yield and Quality. 1993. Vol. 14, No. 2.

279 Towne, Bradford and Devor, Eric J. Human Biology; Effect of Storage Time and Temperature on DNA Extracted from Whole Blood Samples. 4/90. Vol. 62, No. 2, 301-06.

280 Madisen, Linda, et al. American Journal of Medical Genetics; DNA Banking: The Effects of Storage of Blood and Isolated DNA on Integrity of DNA. 1987. 27:379-90.

281 Yates, John R. W., et al. Journal of Medical Genetics; Guidelines for DNA Banking. 1989. Vol. 26, 245-50.

282 Michels, Rick and Naber, Stephen. JIFCC; Specimen Storage and the Use of a Relational Database. April 1995. Vol. 7, Issue 2.

283 Sugarman, Jeremy, Reisner, Emily G., and Kurtzberg, Joanne. Journal of the American Medical Association; Ethical Aspects of Banking Placental Blood for Transplantation. 12/13/95. Vol. 274, No. 22.

284 Manes, Stephen. New York Times; Time and Technology Threaten Digital Archives. 4/7/98.

285 Belgrader, P., et al. Armed Forces Institute of Pathology; Automated DNA Purification and Amplification from Blood-Stained Cards Using a Robotic Workstation. May 1995.

286 Hagerty, James. Wall Street Journal; Electronic Tags are Beeping Everywhere. 4/20/98.

287 Haseltine, William. New York Times; Gene-Mapping Without Tax Money. 5/21/98.

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