Relative futility: Limits to genetic privacy protection because of the inability to prevent disclosure of genetic information by relatives

Minnesota Law Review

Volumn 95, Issue 2, 2011, Pages 682-713

  Woodage, Trevor ^a  

^a UNIVERSITY OF MINNESOTA LAW SCHOOL   (United States)

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[No Author keywords available]

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EID: 79955914709     PISSN: 00265535     EISSN: None     Source Type: Journal    
DOI: None     Document Type: Article

References (225)

1. See Bearder v. Minnesota, No. A10-101, 2010 WL 3307066 (Minn. Ct. App. Aug. 24, 2010);
2. Complaint, Bearder v. Minnesota, No. 27-CV-09-5615 (Hennepin County, Minn., Dist. Ct. Mar. 11, 2009), available at http://www.cchconline.org/pr/ FINAL-Plaintif-s-v-MDH-complaint.doc (last visited Nov. 7, 2010);
3. Press Release, Citizens' Council on Health Care, Nine Families sue State of Minnesota, Allege Violations of State Genetic Privacy Law in Newborn Screening (Mar. 11, 2009), available at http://www.cchconline.org/pr/pr031109. php.
4. Press Release, Citizens' Council on Health Care, supra note 1.
5. Complaint, supra note 1, ¶ 9.
6. See, e.g., Editorial, Genetic Privacy, BOS. GLOBE, June 6, 1999, at G6 (noting that legislators were "grappl[ing] with the basics of citizen [genetic] privacy, seeking to protect the individual from misuse of those secrets in a medical frontier that might easily become an Orwellian nightmare");
7. Douglas A. Levy, Experts Call for Genetic Privacy Legislation, UNITED PRESS INT'L, Oct. 18, 1991, available in LEXIS, Wire Service Stories (quoting U. S. Representative John Conyers as saying that "[p]ublic release of people's genetic information is a Pandora's Box that is best left unopened");
8. Sharon Schmickle, Genetic-Privacy Fears Rippling Nationwide, STAR TRIB. (Minneapolis, Minn.), Feb. 18, 2001, at 18A, available at
9. WLNR 10302883 (quoting an employee subject to workplace genetic testing as saying, "I don't want the entire world to know if someone in our family has a potential for a disease").
10. See JAMES J. NORA ET AL., MEDICAL GENETICS: PRINCIPLES AND PRACTICE 216 (4th ed. 1994) ("[A]lleles at linked loci tend to be inherited by offspring in the same combinations in which they occur in parents." (emphasis omitted)).
11. See id. at 395 ("Identical... twins result from the splitting of a fertilized egg, giving rise to two genetically identical individuals.").
12. THOMAS D. GELEHRTER ET AL., PRINCIPLES OF MEDICAL GENETICS 52 (2d ed. 1998).
13. See Genetic Information Nondiscrimination Act of 2008, Pub. L. No. 110-233, 122 Stat. 881 (codified in scattered sections of 26, 29, and 42 U. S. C.);
14. NANCY LEE JONES & AMANDA K. SARATA, CONG. RESEARCH SERV., RL 30006
15. GENETIC INFORMATION: LEGAL ISSUES RELATING TO DISCRIMINATION AND PRIVACY (updated Mar. 10, 2008).
16. See, e.g., Editorial, Genetic Privacy, supra note 4, at G6 (describing the Massachusetts Legislature's struggle to write genetic privacy laws that can keep up with the rapid scientific progress in the field).
17. See GELEHRTER ET AL., supra note 7, at 178-79.
18. See id. at 23 (defining common genetic conditions as "diseases that are the result of a single mutant gene... that are inherited in simple patterns").
19. See DNA Sequencing Fact Sheet, NAT'L HUMAN GENOME RES. INST., http://www.genome.gov/10001177 (last visited Nov. 7, 2010) ("Scientists need to know the sequence of bases because it tells them the kind of genetic information that is carried in a particular segment of DNA.").
20. JAMES D. WATSON ET AL., MOLECULAR BIOLOGY OF THE GENE 68 (4th ed. 1987).
21. See id. at 74, 86-87. For instance, three nucleotides in the order CGA instruct a cell to insert the amino acid arginine in a particular position in a protein, or the sequence TAA tells a cell to complete the synthesis of a protein.
22. BRUCE ALBERTS ET AL., MOLECULAR BIOLOGY OF THE CELL 367 (5th ed. 2008).
23. GELEHRTER et AL., supra note 7, at 11.
24. NORA et AL., supra note 5, at 12.
25. Id. at 11.
26. See DNA Sequencing Fact Sheet, supra note 12.
27. Id.
28. The Human Genome Project Completion: Frequently Asked Questions, NAT'L HUMAN GENOME RES. INST., http://www.genome.gov/11006943 (last updated Apr. 7, 2009).
29. John Markoff, I. B. M. Joins Pursuit of $1, 000 Genome, N. Y. TIMES, Oct. 6, 2009, at D2, available at
30. WLNR 19662265.
31. See id. (discussing technological advances and the timeline with which they are expected to reduce the total cost of sequencing the human genome).
32. See DNA Sequencing Fact Sheet, supra note 12.
33. See Advanced Sequencing Technology Awards 2008, NAT'L HUMAN GENOME RES. INST., http://www.genome.gov/27527584 (last visited Nov. 7, 2010).
34. See id.
35. See David E. Reich et al., Human Genome Sequence Variation and the Influence of Gene History, Mutation and Recombination, 32 NATURE GENETICS 135, 135-36 (2002) (stating that the average rate of difference between two gene sequences was on the order of 0.1 percent).
36. See Hannah Pulker et al., Finding Genes that Underlie Physical Traits of Forensic Interest Using Genetic Tools, 1 FORENSIC SCI. INT'L: GENETICS 100, 102-03 (2007).
37. See M. R. Munafò et al., Genetic Polymorphisms and Personality in Healthy Adults: A Systematic Review and Meta-Analysis, 8 MOLECULAR PSYCHIATRY 471, 471-72 (2003).
38. See DNA Sequencing Fact Sheet, supra note 12.
39. See George P. Smith, II & Thaddeus J. Burns, Genetic Determinism or Genetic Discrimination?, 11 J. CONTEMP. HEALTH L. & POL'Y 23, 25-35 (1994) (discussing both the association between DNA sequence changes and complex traits and concerns that claims are being made that "one's fate is determined by genetic inheritance").
40. Sonia M. Suter, Disentangling Privacy from Property: Toward a Deeper Understanding of Genetic Privacy, 72 GEO. WASH. L. REV. 737, 744-45 (2004) (noting associations between genetic information, conceptions of self, and concerns about genetic privacy).
41. Samuel D. Warren & Louis D. Brandeis, The Right to Privacy, 4 HARV. L. REV. 193 (1890);
42. see also DANIEL J. SOLOVE & PAUL M. SCHWARTZ, INFORMATION PRIVACY LAW 10-12 (3d ed. 2009) (noting the origin and importance of the Warren and Brandeis article).
43. See Warren & Brandeis, supra note 32, at 195 ("Instantaneous photographs and newspaper enterprise have invaded the sacred precincts of private and domestic life; and numerous mechanical devices threaten to make good the prediction that 'what is whispered in the closet shall be proclaimed from the house-tops.'").
44. See id. at 218-19 (suggesting that the invasion of privacy should be protected at common law as are other personal interests).
45. See SOLOVE & SCHWARTZ, supra note 32, at 26.
46. See William L. Prosser, Privacy, 48 CALIF. L. REV. 383, 389 (1960) (characterizing the four privacy torts as: (1) "Intrusion upon the plaintiff's seclusion or solitude"; (2) "Public disclosure of embarrassing private facts about the plaintiff "; (3) "Publicity which places the plaintiff in a false light in the public eye"; and (4) "Appropriation... of the plaintiff's name or likeness").
47. SOLOVE & SCHWARTZ, supra note 32, at 27.
48. RESTATEMENT (SECOND) OF TORTS §§ 652B-652E (1977).
49. See, e.g., Lake v. Wal-Mart Stores, Inc., 582 N. W.2d 231, 234-35 (Minn. 1998).
50. RESTATEMENT (SECOND) OF TORTS § 652D.
51. Id.
52. 381 U. S. 479 (1965).
53. Id. at 484.
54. See id. at 485-86.
55. See vWhalen v. Roe, 429 U. S. 589, 599 (1977) (noting that constitutional protection of privacy extends to an "individual interest in avoiding disclosure of personal matters").
56. Diane M. DeGroat, Comment, When Students Test Positive, Their Privacy Fails: The Unconstitutionality of South Carolina's HIV/AIDS Reporting Requirement, 17 AM. U. J. GENDER SOC. POL'Y & L. 751, 761-62 (2009).
57. Id. at 761;
58. see also, e.g., Walls v. City of Petersburg, 895 F.2d 188, 192 (4th Cir. 1990);
59. Daury v. Smith, 842 F.2d 9, 13 (1st Cir. 1988);
60. Fadjo v. Coon, 633 F.2d 1172, 1175 (5th Cir. 1981).
61. Doe v. Wigginton, 21 F.3d 733, 740 (6th Cir. 1994).
62. Alexander v. Peffer, 993 F.2d 1348, 1350 (8th Cir. 1993).
63. SOLOVE & SCHWARTZ, supra note 32, at 34;
64. see also Mark Silverstein, Note, Privacy Rights in State Constitutions: Models for Illinois?, 1989 U. ILL. L. REV. 215, 226-58 (reviewing existing state constitutional provisions as they relate to the protection of privacy).
65. Hill v. Nat'l Collegiate Athletic Ass'n, 865 P.2d 633, 644 (Cal. 1994).
66. See Anita L. Allen, Genetic Privacy: Emerging Concepts and Values, in GENETIC SECRETS: PROTECTING PRIVACY AND CONFIDENTIALITY IN THE GENETIC ERA 31, 49 (Mark A. Rothstein ed., 1997) ("Proprietary genetic privacy is further suggested by the related notion that human DNA is owned by the persons from whom it is taken, as a species of private property.").
67. 793 P.2d 479 (Cal. 1990).
68. See id. at 488-93.
69. See id. (holding that a patient's ownership interest over his cells does not extend beyond the time the cells were taken from his body).
70. See Radhika Rao, Property, Privacy, and the Human Body, 80 B. U. L. REV. 359, 434-36 (2000) ("[P]roperty traditionally implies alienability.... Privacy, on the other hand, does not carry the same connotations. Personal privacy encompasses the right to possess one's own body and the right to exclude others, but does not embrace the power to give, sell, or otherwise transfer body rights to other individuals." (citations omitted));
71. Suter, supra note 31, at 746 ("[T]he property model is deeply problematic as a tool to protect our interests in genetic information. ").
72. See supra Part I. B (noting that constitutional privacy protections generally only protect against government actors and describing the circuit split over whether there is a constitutional right to protection of personal information).
73. Privacy Act of 1974, 5 U. S. C. § 552a (2006).
74. Id. § 552a (g) (1).
75. Id. § 552a (i).
76. Id. § 552a (a) (1).
77. Id. § 552a (g) (4).
78. Health Insurance Portability and Accountability Act of 1996, Pub. L. No. 104-191, 110 Stat. 1936
79. (codified in scattered sections of 26, 29, and 42 U. S. C.).
80. SOLOVE & SCHWARTZ, supra note 32, at 431.
81. Id.
82. Id. at 431-32.
83. Standards for Privacy of Individually Identifiable Health Information, 67 Fed. Reg. 53, 182 (Aug. 14, 2002) (codified at 45 C. F. R. pts. 160, 164).
84. 45 C. F. R. § 160. 103 (2009).
85. JONES & SARATA, supra note 8, at CRS-19.
86. 45 C. F. R. § 160. 102.
87. Genetic Information Nondiscrimination Act of 2008, Pub. L. No. 110-233, 122 Stat. 881 (codified in scattered sections of 26, 29, and 42 U. S. C.).
88. SOLOVE & SCHWARTZ, supra note 32, at 507.
89. 29 U. S. C. § 1191b (d) (Supp. II 2008) (defining "genetic information" to mean "with respect to any individual, information about-(i) such individual's genetic tests, (ii) the genetic tests of family members of such individual, and (iii) the manifestation of a disease or disorder in family members of such individual, " and "genetic test" as the "analysis of human DNA, RNA, chromosomes, proteins, or metabolites, that detects genotypes, mutations, or chromosomal changes").
90. 42 U. S. C. §§ 1320d-9 (a) (1), 1320d (4) (B) (Supp. II 2008).
91. See, e.g., Timothy J. Aspinwall, Imperfect Remedies: Legislative Efforts to Prevent Genetic Discrimination, 19 ANNALS HEALTH L. 121, 122-23 (2010) (describing health insurance protection under GINA, but noting that the legislation fails to protect against the use of genetic information in the context of long-term care, disability, or life insurance);
92. Mark A. Rothstein, Is GINA Worth the Wait?, 36 J. L. MED. & ETHICS 174, 177 (2008) (noting both the symbolic value of declaring a policy against genetic discrimination and the dangers of genetic exceptionalism-giving genetic information a privileged status as compared with other forms of health information);
93. Joanne Barken, Note, Judging GINA: Does the Genetic Information Nondiscrimination Act of 2008 Offer Adequate Protection?, 75 BROOK. L. REV. 545, 572-77 (2009) (arguing that additional legislation will be needed to ensure adequate protection against use of genetic information in employment situations).
94. See JONES & SARATA, supra note 8, at CRS-20 to CRS-21.
95. See id.
96. See Genetic Privacy Laws, NAT'L CONF. ST. LEGISLATURES, http://www.ncsl.org/IssuesResearch/Health/GeneticPrivacyLaws/tabid/14287/ Default.aspx (last updated Jan. 2008) (citing survey information current as of January 2008).
97. GRAEME LAURIE, GENETIC PRIVACY: A CHALLENGE TO MEDICO-LEGAL NORMS 203-05 (2002).
98. See Margaret Everett, The Social Life of Genes: Privacy, Property and the New Genetics, 56 SOC. SCI. & MED. 53, 56-58 (2003) (discussing different approaches taken to the "genes as property" debate).
99. But see Moore v. Regents of the Univ. of Cal., 793 P.2d 479, 493 (Cal. 1990) (refusing to recognize an ownership interest in human body parts).
100. See HANNAH ARENDT, THE HUMAN CONDITION 71 (1958) ("[T]he four walls of one's private property offer the only reliable hiding place from the common public world.... A life spent entirely in public, in the presence of others, becomes... shallow.");
101. Edward Shils, Privacy: Its Constitution and Vicissitudes, 31 LAW & CONTEMP. PROBS. 281, 283 (1966) ("The 'private life' is a secluded life, a life separated from the compelling burdens of public authority.").
102. See Charles Fried, Privacy, 77 YALE L. J. 475, 482 (1968) ("Privacy is not simply an absence of information about what is in the minds of others; rather it is the control we have over information about ourselves.").
103. LAURIE, supra note 79, at 6.
104. Id. at 6 n. 27.
105. See George J. Annas, Genetic Prophecy and Genetic Privacy, 32 TRIAL 19, 20 (1996) ("The information in one's DNA can be thought of as a coded probabilistic future diary because it describes an important part of a person's unique future and, as such, can affect and undermine our view of ourself and our life's possibilities.").
106. Margaret Everett, Can You Keep a (Genetic) Secret? The Genetic Privacy Movement, 13 J. GENETIC COUNSELING 273, 274 (2004).
107. See Annas, supra note 85, at 25 ("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. ").
108. KEVIN M. KEENAN, INVASION OF PRIVACY: A REFERENCE HANDBOOK 143 (2005).
109. See Everett, supra note 86, at 277 (commenting on the relationship between genetic privacy and discrimination).
110. See Patricia Nemeth & Terry W. Bonnette, Genetic Discrimination in Employment, 88 MICH. B. J. 42, 45 (2009) ("'[M]any people were concerned that genetic information could be used by employers to discriminate in hiring or promotion decisions.'"
111. (quoting MICH. LEG., FIRST ANALYSIS, SB 593, 90th Sess., at 1 (2000), available at http://www.legislature.mi.gov/documents/1999-2000/billanalysis/ House/htm/1999-HLA-0593-A.htm);
112. Sheryl Gay Stolberg, President Calls for Genetic Privacy Bill, N. Y. TIMES, Jan. 18, 2007, at A14
113. available at 2007 WLNR 978490 (quoting President Bush's statement that "it is important that [genetic] information not be exploited in improper ways"); supra note 4.
114. See supra Part I. C.
115. See, e.g., William J. McDevitt, I Dream of GINA: Understanding the Employment Provisions of the Genetic Information Nondiscrimination Act of 2008, 54 VILL. L. REV. 91, 93-96 (2009) (indicating that employment-related safeguards were among the chief concerns related to genetic discrimination under GINA).
116. See, e.g., Amy Harmon, Fear of Insurance Trouble Leads Many to Shun or Hide DNA Tests, N. Y. TIMES, Feb. 24, 2008, at A1
117. available at 2008 WLNR 3619695;
118. Kathy L. Hudson et al., Genetic Discrimination and Health Insurance: An Urgent Need for Reform, 270 SCIENCE 391, 392 (1995).
119. Patient Protection and Affordable Care Act of 2010, Pub. L. No. 111-148, § 2704, 124 Stat. 119, 154;
120. see also Peter Grier, Health Care Reform Bill 101: Rules for Preexisting Conditions, CHRISTIAN SCI. MONITOR, Mar. 24, 2010, available at
121. WLNR 7558052.
122. See Pauline T. Kim, Regulating the use of Genetic Information: Perspectives from the U. S. Experience, 31 COMP. LAB. L. & POL'Y J. 693, 695-96 (2010) (noting the rarity of cases of employment discrimination based on the use of genetic information in the United States);
123. Jeffrey S. Morrow, Note, Insuring Fairness: The Popular Creation of Genetic Antidiscrimination, 98 GEO. L. J. 215, 225-26 (2009) (reviewing evidence for and against the occurrence of frequent instances of genetic discrimination).
124. See CCHC Testimony on MN Plan to Mandate Genetic Testing of New-borns, CITIZENS' COUNCIL ON HEALTHCARE (Mar. 20, 2003) http://www.cchconline.org/ testimony/t032003.php (discussing state government plans to implement a database for newborn genetic screening purposes: "This is not the proper role of government in a free society. History has shown the less than beneficent activities that can occur where such data systems exist");
125. see also Bradley Graham, DNA Sampling Sparks Worries Two Marines Take Privacy Issues to Court, SEATTLE TIMES, Apr. 14, 1996, at A22
126. available at 1996 WLNR 1342647 (citing concerns about the uses intended by the government for genetic information obtained as a result of acquiring DNA samples from military personnel).
127. Tuija Takala & Heta Aleksandra Gylling, Who Should Know About Our Genetic Makeup and Why?, 26 J. MED. ETHICS 171, 172 (2000) (noting that possible carriers are not under a prudential obligation to confirm their mutation status if a disease is incurable).
128. Elisabeth W. Almqvist et al., A Worldwide Assessment of the Frequency of Suicide, Suicide Attempts, or Psychiatric Hospitalization After Predictive Testing for Huntington Disease, 64 AM. J. HUM. GENETICS 1293, 1300-01 (1999).
129. An online survey carried out in August 2006 examined the opinions of 3091 U. S. adults towards genetics and the uses of genetic information. Public Overwhelmingly Supportive of Genetic Science and Its use for a Wide Variety of Medical, Law Enforcement and Personal Purposes, HARRIS INTERACTIVE (Aug. 30, 2006), http://www.harrisinteractive.com/news/allnewsbydate.asp? NewsID=1088 [hereinafter Harris Interactive]. Ninety-three percent of respondents agreed that the "science of genetics and DNA" was a "very good [or] good thing." Id. The same percentage of respondents strongly or somewhat supported the use of genetic information "[t]o identify criminals in rape, murder and other crimes." Id. Eighty-five percent or more of those surveyed were similarly supportive of the use of genetic information for establishing paternity, carrying out research to find new ways to prevent or treat diseases, testing by doctors to identify diseases for which people are at risk, and tracing one's family tree and ancestors. Id.
130. See id. (stating that only fourteen percent of respondents supported the use of genetic information by insurance companies to determine who to insure and how much to charge, while twelve percent supported its use by employers to help decide whether to employ a person).
131. See Kira A. Apse et al., Perceptions of Genetic Discrimination Among At-Risk Relatives of Colorectal Cancer Patients, 6 GENETICS MED. 510, 513 tbl.2 (2004) (noting, for instance, that forty-seven percent of survey participants would be likely or very likely to ask that their genetic test results be excluded from their medical record).
132. See Jeantine E. Lunshof et al., From Genetic Privacy to Open Consent, 9 NATURE REVIEWS GENETICS 406, 408 (2008) (citing the willingness of subjects to participate in genetic research);
133. HARRIS INTERACTIVE, supra note 99 (stating that ninety-one percent of survey participants supported the use of genetic information for genetic disease research).
134. See Sarah Lyall, A Country Unveils Its Gene Pool and Debate Flares, N. Y. TIMES, Feb. 16, 1999, at F1, available at
135. WLNR 3030501 (explaining the breadth of the deCODE project).
136. See Gísli Pálsson & Kristín E. Haróardóttir, For Whom the Cell Tolls: Debates About Biomedicine, 43 CURRENT ANTHROPOLOGY 271, 283 (2002) (noting that many Icelanders were eager to contribute their blood samples and medical records to genetic research programs).
137. Id. at 275-76.
138. Id. at 277; see also id. (noting also that Icelanders have a particular interest in maintaining comprehensive family trees).
139. See id. at 283 ("Many Icelanders seem proud of their 'Nordic' roots and their genetic makeup, and they are eager to 'offer' their 'unique' blood samples and medical records... to science and the advancement of human well-being." (citation omitted)).
140. See supra notes 99, 102 and accompanying text.
141. See Lunshof et al. supra note 102, at 406.
142. See Mission, PERS. GENOME PROJECT, http://www.personalgenomes.org/ mission.html (last visited Nov. 7, 2010) (discussing the goals of the project, among which is to improve "understanding of personal genomics and its potential").
143. PGP-10, PERS. GENOME PROJECT, http://www.personalgenomes.org/pgp10.html (last updated Mar. 16, 2009).
144. See Events, PERS. GENOME PROJECT, http://www.personalgenomes.org/events/ (last visited Nov. 7, 2010) (noting that the Harvard Medical School Institutional Review Board approved the involvement of one participant in the PGP in 2005, expanded that approval to ten participants in 2006, and again expanded approval to 100, 000 participants in 2008).
145. See Newsletter #1, PERS. GENOME PROJECT (Apr. 2009), http://www. personalgenomes.org/newsletter/01.html.
146. See supra note 97 and accompanying text.
147. Deborah Schrag et al., Life Expectancy Gains from Cancer Prevention Strategies for Women with Breast Cancer and BRCA1 or BRCA2 Mutations, 283 JAMA 617, 617 (2000).
148. See R. Andorno, The Right Not to Know: An Autonomy Based Approach, 30 J. MED. ETHICS 435, 436-37 (2004) (discussing the theoretical underpinnings of the "right not to know").
149. But cf. Gillian Nycum et al., Intra-Familial Obligations to Communicate Genetic Risk Information: What Foundations? What Forms?, 3 MCGILL J. L. & HEALTH 21, 42-45 (2009) (suggesting that people might owe a duty of care to their genetic relatives and would thus be obliged to disclose knowledge of mutations associated with disease risk).
150. See Andorno, supra note 116, at 439 (noting that the right not to know "is a relative right, in the sense that it may be restricted when disclosure to the individual is necessary in order to avoid serious harm to third parties, especially family members");
151. see also Nycum et al., supra note 116, at 39-47 (discussing possible moral and legal obligations requiring disclosure of genetic information to at-risk family members).
152. See Lainie Friedman Ross & Margaret R. Moon, Ethical Issues in Genetic Testing of Children, 154 ARCHIVES PEDIATRIC & ADOLESCENT MED. 873, 873-74 (2000) (discussing implications of parental control over consent for genetic tests).
153. Lunshof et al., supra note 102, at 407.
154. NORA ET AL., supra note 5, at 395.
155. See Lori B. Andrews, Is There a Right to Clone? Constitutional Challenges to Bans on Human Cloning, HARV. J. L. & TECH. 643, 647 (1998) (noting that clones are genetically identical to the source individual except for the minor contribution from mitochondrial DNA).
156. See A. J. Jeffreys et al., Individual-Specific "Fingerprints" of Human DNA, 316 NATURE 76, 76-77 (1985) (describing the development of a genetic test producing results that are "completely specific to an individual").
157. See NORA ET AL., supra note 5, at 6-7 (describing the formation of an embryo from equal numbers of chromosomes from each gamete).
158. See GELEHRTER ET AL., supra note 7, at 52.
159. Henry T. Greely et al., Family Ties: The use of DNA Offender Databases to Catch Offenders' Kin, 34 J. L. MED. & ETHICS 248, 251-52 (2006) (discussing the degree and random nature of DNA sharing by relatives).
160. If individuals Alan, Bill, and Charlie are grandfather, son, and grandson, respectively, and an investigator had access to DNA sequence information from Alan and Charlie, then it would be possible to make accurate predictions about Bill's DNA sequence. For example, if at a particular region on chromosome fifteen, Alan had chromosomal sequences of CCTGATGC and CATGGTGT (one copy inherited from each of Alan's parents; underlined letters indicate nucleotides that vary between individuals), and Charlie's sequence showed CCTGGTGC and CATGGTGT, then an investigator could predict with a reasonable degree of certainty that Bill carried at least one copy of CATGGTGT, the sequence that Charlie had inherited-through Bill-from his grandfather Alan.
161. Michael R. Hayden & Berry Kremer, Basal Ganglia Disorders, in 2 PRINCIPLES AND PRACTICE OF MEDICAL GENETICS 2197, 2203-07
162. (David L. Rimoin et al. eds., 3d ed. 1997) (describing the fatal nature of the disorder and stating that it is inherited in an autosomal dominant manner, i.e., that half of a carrier's offspring will inherit the disease).
163. See 29 U. S. C. § 1191b (d) (6) (a) (Supp. II 2008) (including the use of DNA test results or disease manifestations in relatives under prohibited conduct).
164. See Economic Impact of Cancer, AM. CANCER SOC'Y, http://www.cancer.org/ cancer/cancerbasics/economic-impact-of-cancert (last visited Nov. 7, 2010) (noting the estimated health expenditures for cancer topped ninety-three billion dollars in 2008).
165. See supra note 95 and accompanying text.
166. Apse et al., supra note 101, at 512.
167. See David A. Wheeler et al., The Complete Genome of an Individual by Massively Parallel DNA Sequencing, 452 NATURE 872, 875 (2008) ("Third-party relatives are not typically considered research participants and their consent is not generally required for research participation. ").
168. See Harvard Medical School, Consent Form, PERS. GENOME PROJECT, http://www.personalgenomes.org/consent/PGP-Consent-Approved03242009.pdf (last visited Nov. 7, 2010) (stating that participants were "strongly encouraged to discuss this study and its potential risks with [their] immediate family members, " but were not required to seek their consent);
169. see also Wheeler et al., supra note 132, at 875 (stating that, with respect to a research project resulting in the publication of the complete genome sequence of James Watson, the co-discoverer of the structure of DNA, Dr. Watson was "strongly encouraged to discuss these issues with biological relatives and to make a family decision about research participation and data release, " but that "[t]he participant's autonomous decision to participation in research typically outweighs any objections raised by third-party relatives").
170. See Lunshof et al., supra note 102, at 408 ("A crucial consideration is that consent for disclosure... is given only upon certain conditions; a key condition usually being the assurance of secrecy with regard to personal identity and information content.").
171. See ASHG Response to NIH on Genome-Wide Association Studies, AM. SOC'Y HUM. GENETICS (Nov. 30, 2006), http://www.ashg.org/pages/statement-nov3006.shtml ("[T]he most accurate individual identifier is the DNA sequence itself or its surrogate here, genotypes across the genome. It is clear that these available genotypes alone, available on tens to hundreds of thousands of individuals in the repository, are more accurate identifiers than demographic variables alone....").
172. Alison Motluck, Tracing Dad Online, NEW SCIENTIST, Nov. 5, 2005, at 6, 6 (noting that a resourceful fifteen-year-old boy was able to identify his anonymous sperm-donor father by sending his own DNA for analysis of y chromosome (paternal lineage) markers, matching the pattern to a surname in a genealogy database, and then using that name along with some basic demographic information about the sperm donor to identify and contact his genetic father);
173. see also Dawn R. Swink & J. Brad Reich, Caveat Vendor: Potential Progeny, Paternity, and Product Liability Online, 2007 BYU L. REV. 857, 857-69 (discussing the same case and recent trends allowing for the identification of anonymous sperm donors through genetic analysis and the Internet).
174. See Lawrence Hon, Introducing Relative Finder: The Newest Feature from 23 and Me, SPITTOON (Nov. 19, 2009, 5:13 PM), http://spittoon. 23andme.com/2009/11/19/introducing-relative-finder-the-newest-feature-from- 23andme (discussing the launch of the service and noting, with no apparent irony, that "[w]ith Relative Finder, you can discover more about your ancestry than you ever thought possible!, " and that "[a]fter all, you never know who you might find").
175. See Dan Vorhaus, Re-identification and Its Discontents, GENOMICS L. REP. (Oct. 13, 2009), http://www.genomicslawreport.com/index.php/2009/10/13/re- identification-and-its-discontents.
176. See Daniel J. Solove, Privacy and Power: Computer Databases and Metaphors for Information Privacy, 53 STAN. L. REV. 1393, 1412 (2001) (noting that once information appears on the Internet it creates "a permanent record of unparalleled pervasiveness and depth.... [A]lmost everything on the Internet is being archived"). (Pubitemid 33646599)
177. See Greely et al., supra note 125, at 250 ("[E]very American state ha[s] established forensic DNA databases.").
178. Aaron B. Chapin, Note, Arresting DNA: Privacy Expectations of Free Citizens Versus Post-Convicted Persons and the Unconstitutionality of DNA Dragnets, 89 MINN. L. REV. 1842, 1847-55 (2005) (reviewing the general tendency under the "special needs" doctrine of the Fourth Amendment and the DNA Act of 2000 to uphold the legality of forensic DNA databases).
179. See Greely et al., supra note 125, at 250.
180. See, e.g., D. H. Kaye & Michael E. Smith, DNA Identification Databases: Legality, Legitimacy, and the Case for Population-Wide Coverage, 2003 WIS. L. REV. 413, 415;
181. Michael Seringhaus, Op-Ed., To Stop Crime, Share Your Genes, N. Y. TIMES, Mar. 15, 2010, at A23, available at
182. WLNR 5373377.
183. See Greely et al., supra note 125, at 248-49.
184. See, e.g., id. (discussing the use of familial DNA to catch several felons in the United States and United Kingdom);
185. Jennifer Steinhauer, "Grim Sleeper" Arrest Fans Debate on DNA Use, N. Y. TIMES, July 9, 2010, at A14, available at
186. WLNR 13801521 (recounting the role of familial DNA searching in leading to the apprehension of a serial killer in California).
187. See, e.g., Jessica D. Gabel, Probable Cause from Probable Bonds: A Genetic Tattle Tale Based on Familial DNA, 21 HASTINGS WOMEN'S L. J. 3, 26-57 (2010) (examining constitutional and other legal issues associated with familial DNA searching);
188. Kimberly A. Wah, Note, A New Investigative Lead: Familial Searching as an Effective Crime-Fighting Tool, 29 WDHITTIER L. REV. 909, 931-43 (2008) (making the case that familial searching does not pose insoluble constitutional dilemmas).
189. *1 (Mass. Super. Ct. Mar. 3, 2004).
190. *1-2.
191. *1.
192. *4 (citing Peckham v. Bos. Herald, Inc., 719 N. E.2d 888, 892 (Mass. App. Ct. 1999)). The court came to an expansive reading of the interest, stating that "[t]he scope of a matter of legitimate concern to the public is not limited to 'news,' in the sense of reports of current events or activities. It extends also to the use of names, likenesses, or facts in giving information to the public for purposes of education, amusement or enlightenment, when the public may reasonably be expected to have a legitimate interest in what is published."
193. *5 (citing RESTATEMENT (SECOND) OF TORTS § 652D cmt. j (1977)).
194. *6.
195. Id.
196. Sonja R. West, The Story of Me: The Underprotection of Autobiographical Speech, 84 WASH. U. L. REV. 905, 966 (2006).
197. See Annas, supra note 85, at 20.
198. Fla. Star v. B. J. F., 491 U. S. 524, 541 (1989).
199. Andrew J. McClurg, Kiss and Tell: Protecting Intimate Relationship Privacy Through Implied Contracts of Confidentiality, 74 U. CIN. L. REV. 887, 888 (2006).
200. Eugene Volokh, Freedom of Speech and Information Privacy: The Troubling Implications of a Right to Stop People from Speaking About You, 52 STAN. L. REV. 1049, 1057 (2000).
201. See McClurg, supra note 156, at 912-15.
202. See Neil M. Richards & Daniel J. Solove, Privacy's Other Path: Recovering the Law of Confidentiality, 96 GEO. L. J. 123, 126 (2007) ("[I]n England, spouses, ex-spouses, friends, and nearly anyone else can be liable for divulging confidences... [while] American privacy law has never fully embraced privacy within relationships.").
203. See Milton C. Reagan, Jr., Spousal Privilege and the Meanings of Marriage, 81 VA. L. REV. 2045, 2055 (1995) ("[T]he purpose of the privilege 'is to... prevent[] husband and wife from becoming adversaries in a criminal proceeding.'"
204. (quoting United States v. Armstrong, 476 F.2d 313, 315 (5th Cir. 1973))).
205. Id.
206. Id. at 2053-54 (noting that the traditional approach binding one spouse to the wishes of the other applies in only thirteen states, while the approach in which the witness spouse alone could invoke the privilege applies in twenty-one states, federal court, and the District of Columbia).
207. See, e.g., Malinda L. Seymore, Isn't It a Crime: Feminist Perspectives on Spousal Immunity and Spousal Violence, 90 Nw. U. L. REV. 1032, 1064-80 (1996) (examining and criticizing the role of traditional spousal immunity from a feminist perspective, and arguing that individual autonomy should prevail over compelled testimony).
208. See, e.g., Editorial, A Ban on Genetic Discrimination, N. Y. TIMES, Nov. 22, 2009, at WK9, available at
209. WLNR 23542177 (welcoming the effects and intent of the genetic nondiscrimination features of GINA).
210. But see Jeremy A. Colby, Note, An Analysis of Genetic Discrimination Legislation Proposed by the 105th Congress, 24 AM. J. L. & MED. 443, 459-63 (1998) (discussing arguments that have been made against genetic nondiscrimination legislation, most prominently by employer organizations and the insurance industry).
211. Genetics Privacy and Legislation, HUM. GENOME PROJECT INFO., http://www.ornl.gov/sci/techresources/Human-Genome/elsi/legislat.shtml (last modified Sept. 16, 2008).
212. See id.
213. Progress is evident as displayed in a recent New York Times editorial discussing GINA. The editorial focuses squarely on the issue of genetic discrimination with no conflation between the concepts of genetic discrimination and genetic privacy. Editorial, A Ban on Genetic Discrimination, supra note 164, at WK9.
214. See, e.g., Rothstein, supra note 75, at 174 (suggesting that GINA is "fatally flawed" and its goals cannot be met without addressing broader issues relating to the health finance system).
215. See 29 U. S. C. § 1191b (d) (6) (A) (ii) (Supp. II 2008) (defining genetic information as including "genetic tests of family members");
216. see also id. § 1191b (d) (5) (B) (defining family members as including any "first-degree, second-degree, third-degree, or fourth-degree relative").
217. DAVID BRIN, THE TRANSPARENT SOCIETY: WILL TECHNOLOGY FORCE US TO CHOOSE BETWEEN PRIVACY AND FREEDOM? (1998).
218. Id. at 3-14.
219. Id. at 334.
220. SOLOVE & SCHWARTZ, supra note 32, at 716;
221. see also 15 U. S. C. § 1681 (b) (2006) ("It is the purpose of this subchapter to require that consumer reporting agencies adopt reasonable procedures for meeting the needs of commerce... in a manner which is fair and equitable to the consumer....").
222. SOLOVE & SCHWARTZ, supra note 32, at 716-19.
223. See 15 U. S. C. § 1681g.
224. See, e.g., Andrew Pollack, New Venture Aims to Guard Genetic Data, N. Y. TIMES, Oct. 9, 2000, at C2, available at
225. WLNR 3300345 (noting the example of First Genetic Trust, a company that billed itself as a "genetic bank, " holding a person's genetic information in a secure account and only releasing it with that person's permission).