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Published online by Cambridge University Press: 24 February 2021
The author served on one of the panels convened by the Office of Technology Assessment to discuss the legal and insurance issues of screening for cystic fibrosis.
1 For example, because our health care system tends to provide genetic services during the prenatal period or following the birth of an affected child, “adults involved in a pregnancy will likely be the first population to undergo routine CF carrier screening … .” Office of Technology Assessment, U.S. Congress, Cystic Fibrosis and DNA Tests: Implications of Carrier Screening 163 (1992) [hereinafter Report]. Consequently, genetic testing is linked with the highly charged issue of abortion. Id. at 60. For an ethical analysis of genetic screening, see generally President's Comm'n for the Study of Ethical Problems in Medicine and Biomedical and Behavioral Research, Screening and Counseling for Genetic Conditions: The Ethical, Social, and Legal Implications of Genetic Screening, Counseling, and Education Program. (1983).
2 OTA is the research arm of the United States Congress, available at congressional request to research and analyze emerging technologies to assist Congress in deciding whether to promulgate legislation and, if so, in what form. The House Committee on Science, Space, and Technology, and the House Committee on Energy and Commerce requested that OTA evaluate the scientific, clinical, legal, economic, and social considerations of carrier screening for CF. Report, supra note 1, at iii.
3 Id. at 50.
4 Id. at iii.
5 Id. at 62.
6 The OTA report considers a wide range of other legal and insurance issues, from genetic counseling to malpractice. The risks of discrimination in the workplace are not the primary focus of the report. For a discussion of the use of genetic screening and monitoring in the work place, see Larry Gostin, Genetic Discrimination: The Use of Genetically Based Diagnostic and Prognostic Tests by Employers and Insurers, 17 Am. J.L. & Med. 109 (1991); Office of Technology Assessment, U.S. Congress, Genetic Monitoring and Screening in the Work Place (1990).
7 The OTA found that the following factors will predominantly affect carrier screening for CF: genetic services delivery and customs of care; public education; professional capacity; financing; stigmatization, classification, and discrimination issues; quality assurance of clinical laboratories and DNA test kits; automation; and costs and cost-effectiveness. Except for costeffectiveness, all of these factors “extend beyond CF to global concerns about future tests to assess other genetic risks.” Report, supra note 1, at 20.
8 Id. at 69.
9 Id.
10 Id. at 70.
11 Id. at 49.
12 Id. at 69.
13 Id. at 77.
14 Lung therapy involves managing lung-related problems through the use of aerosols, bronchodilators, corticosteroids, and antibiotics. Id. at 73.
15 Digestive therapies include pancreatic enzyme replacement, administration of fat-soluble vitamins, and use of dietary supplements. Id. at 75.
16 Id. at 76.
17 Id. at 77.
18 Id.
19 Id. at 6.
20 Id, at 163.
21 Id. at 18.
22 Id. at 176.
23 Id. at 194.
24 Id. at 27 n.9.
25 Id. at 199.
26 Office of Technology Assessment, U.S. Congress, Genetic Tests and Health Insurance: Results of a Survey 32 (1992) [hereinafter Insurance Survey].
27 Id. at 11.
28 Id.
29 Id.
30 Id. at 20.
31 Id. at 32.
32 Id.
33 Id. at 14.
34 Id. at 14-19.
35 Id.
36 Report, supra note 1, at 207. For example, one survey respondent “reported that a patient with a CF-afFected child had been dropped by one insurance company and would not consider prenatal testing in the future for fear her current insurer would not cover the child should she decide to continue the pregnancy.” Office of Technology Assessment, U.S. Congress, Genetic Counseling and Cystic Fibrosis Carrier Screening: Results of a Survey 13 (1992) [hereinafter Counseling Survey].
37 Insurance Survey, supra note 26, at 19.
38 Id
39 Id.
40 Report, supra note 1, at 197 (emphasis added). The emphasized word, “they,” highlights the ambiguity in this important question. Did the health insurance carrier inform the couple that they, the couple, will have no financial responsibility for the CF-related costs for the child, or did the health insurance carrier inform the couple that they, the health insurance carrier, will have no financial responsibility for the CF-related costs for the child? OTA did not seem to recognize the ambiguity of this question.
41 Id.
42 Insurance Survey, supra note 26, at 33; Report, supra note 1, at 197.
43 Report, supra note 1, at 207.
44 Id. at 197.
45 Insurance Survey, supra note 26, at 33; see abo Report, supra note 1, at 32, 197.
46 Insurance Survey, supra note 26, at 34.
47 Report, supra note 1, at 33; see also id. at 201-02.
48 Id. at 32.
49 Id. at 207.
50 Id. at 21, 124.
51 Id. at 132. See, e.g., Bruce J., Hillman et al., Frequency and Costs of Diagnostic Imaging in Office Practice—A Comparison of Self-Referring and Radiologist-Referring Physicians, 323 New Eng. J. Med. 1604, 1606 (1990)Google Scholar (study found that physicians who self-referred patients for diagnostic imaging performed the procedure from approximately 2 1/2 to 11 times as often as the physician who referred patients to outside radiologists).
52 One Survey respondent wrote: “As long as no one [i.e., other Insurance companies] is testing we are not at risk beyond that contemplated by our rate structure. As soon as genetic predisposition is employed on a widespread basis we will be forced to follow suit.” Insurance Survey, supra note 26, at 39, app. B (Commercial Health Insurers Comment 1). Another observed: “Our position on treatment of genetic testing and applying such information in our underwriting practices will be directly affected by the position of other insurers.” Id. (Blue Cross and Blue Shield Plans Comment 4).
53 Report, supra note 1, at 174. For example, one Survey respondent stated: “As an insurer, we are not anxious to begin testing for underwriting purposes; however, if an applicant has already taken the test, it is critically important that we have the opportunity to access the test results.“ Insurance Survey, supra note 26, at 39, app. B (Commercial Health Insurers Comment 12).
54 The Report discussed the confidentiality issues inherent in the protection of such test results by providers, noting a variety of civil actions and other protections that are of value in shielding results. Report, supra note 1, at 128-132.
55 A self-insuring employer assumes the risk of health care costs for its employees, using Insurance companies only to cover catastrophic expenses and to provide administrative services, if at all. Rising health care costs and the growth in state-mandated benefits and other state Insurance regulation have encouraged most large-sized employers, and many medium-sized employers, to turn to self-Insurance because the Employee Retirement Income Security Act of 1974 (ERISA) exempts self-insured employee benefit plans from these state-mandated provisions. See 29 U.S.C.A. §§ 1144(a), (b)(2)(A)-(B) (West 1985); see also Metropolitan Life Ins. v. Massachusetts, 471 U.S. 727, 747 (1985).
56 Pub. L. No. 101-336, 104 Stat. 327 (codified as amended in §§ 42 U.S.C. 12101 - 12213 and in scattered sections of 29 U.S.C.A. and 47 U.S.C.A.).
57 Report, supra note 1, at 207. The ADA definition of “disability” focuses on the effect of an impairment, whether an impairment “substantially limits one or more of the major life activities,“ and not on the cause of the impairment, genetic or otherwise. 42 U.S.C.A. § 12102(2) (West 1993).
58 See Gostin, supra note 6, at 121-22 & nn. 66-69. A carrier of a genetic trait for disease will not develop the disease or impairment, and this fact cuts against the existence of protection from discrimination grounded in the ADA. “The ADA's prohibition of discrimination based upon a perception of disability applies to those who falsely assume that carriers are, or will become, disabled.” Id. at 126 (citation omitted); see also 42 U.S.C.A. § 12102(2)(c) (West 1993).
59 McGann v. H & H Music Co., 946 F.2d 401, 408 (5th Cir. 1991), cert, denied, 113 S. Ct. 482 (1992).
60 Report, supra note 1, at 193.
61 Id. at 194.
62 Id.
63 Report, supra note 1, at 207.