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Genetic Information, Privacy and Insolvency

Published online by Cambridge University Press:  01 January 2021

Extract

Biobanks hold out the prospect of significant public and private benefit, as genetic information contained in tissue samples is mined for information. However, the storing of human tissue samples and genetic information for research and/or therapeutic purposes raises a number of serious privacy and autonomy concerns. These concerns are compounded when one considers the possibility that a biobank or its owner might go bankrupt. Insolvency impairs the ability of enforcement regimes, and liability-based regimes in particular, to enforce legal norms. The goal of this essay is to develop guideposts for thinking about private and public enforcement of privacy imposed by donors on tissue samples and/or genetic information when a biobank becomes insolvent.

Type
Symposium
Copyright
Copyright © American Society of Law, Medicine and Ethics 2005

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References

Rothstein, M. A., “Genetic Privacy and Confidentiality: Why They Are So Hard to Protect,” Journal of Law, Medicine, & Ethics 26, no. 3 (1998): 198204 (“If a third party has enough leverage and economic power, it can go to an individual and require him/her to execute a release that authorizes a physician to release the medical records to a third party.”); Anderlick, M. R. and Rothstein, M. A., “Privacy and Confidentiality of Genetic Information: What rules for the New Science?” Annual Review of Genomics and Genetics (2001–2): 401–33.CrossRefGoogle Scholar
For a discussion of the effects of bankruptcy on privacy, see Janger, E. J., “Muddy Property: Generating and Protecting Information Privacy Norms in Bankruptcy,” William SI Mary Law Review 44 (2003): 18011881; see also Janger, E. J., “Privacy Property, Information Costs and the Anticommons,” Hastings Law Review 54 (2003): 899–929Google Scholar
The focus of regulation in healthcare is often phrased in terms of “informed consent.” Schuck, P. H., “Rethinking Informed Consent,” Yale Law Journal 103 (1994): 899959; Rothstein, , “Genetic Privacy,” supra note 1: (“I believe less emphasis should be placed on regulating procedures for disclosure of information by physicians and other holders of medical records and more detailed focus placed on the circumstances surrounding the acquisition of the information by third parties. Who are these third parties? What need do they have for the information?”)CrossRefGoogle Scholar
As I will discuss below, “property” regimes can operate either as a “veto” on transfer, or as an encumbrance that runs with the item.Google Scholar
Janger, , “Muddy Property,” supra note 2, at 1852: (“Property rule or liability rule, the result is the same. Customers give their information away for free.”).Google Scholar
Janger, , “Anticommons,” supra note 2: at 921–22.Google Scholar
Calabresi, G. and Melamed, A. D., “Property Rules, Liability Rules, and Inalienability: One View of the Cathedral,” Harvard Law Review 85 (1972): 10891128, at 1089.CrossRefGoogle Scholar
Hansmann, H. and Kraakman, R., “Property, Contract, and Verification: The Numerous Clauses Problem and the Divisibility of Rights,” Journal of Legal Studies 31 (2002): 373420, at 378.CrossRefGoogle Scholar
Restatement (Second) of Contracts § 344 (1979) (“Judicial remedies [for breach of contract] serve to protect...his ‘expectation interest,’ which is his interest in having the benefit of his bargain by being put in as good a position as he would have been in had the contract been performed....”). In the absence of a statute allowing for statutory or punitive damages, or a separate tort cause of action, the financial incentives associated with a liability regime are likely to understate the actual harm caused by a sale of data. See Stern v. Delphi Internet Services Corp., 626 N.Y.S.2d. 694 (N.Y. Sup. Ct. 1995) (detailing an unsuccessful attempt to use misappropriation theory to sue electronic bulletin board); Dobbs, D. B., The Law of Torts (West: Saint Paul, 2000): 11981200.Google Scholar
Restatement (Second) of Contracts § 359 (“Specific performance...will not be ordered if damages would be adequate to protect the expectation interest of the injured party.”).Google Scholar
Janger, , “Muddy Property,” supra note 2, at 1832–35.Google Scholar
Janger, , “Anticommons,” supra note 2, at 1823. See also Miller, W. W. Jr. and O'Rourke, M. A., “Bankruptcy Law v. Privacy Rights: Which Holds the Trump Card?” Houston Law Review 38 (2001): 777854, at 799–807 (noting that while privacy policies maybe enforceable as contracts, the damages are likely to be difficult to calculate).Google Scholar
15 U.S.C. § 45(a)(1)(2000).Google Scholar
In re Toysmart.com, LLC, No. 00-13995-CJK (Bankr. D. Mass. filed June 9, 2000). Stipulation and [Proposed] Order Establishing Conditions on Sale of Customer Information, presented by Toysmart.com, LLC and the Federal Trade Commission, reprinted Workouts & Bankruptcies in the E-commerce Economy 247, Samet, J. and Murray, Walshe J. eds. (New York: Practicing Law Institute, 2001) (reproducing a stipulation and proposed order placing conditions on the sale of customer information by Toysmart.com).Google Scholar
Texas Business and Commerce code § 17.50(b) (2004).Google Scholar
45 C.F.R. Parts 160, 164.Google Scholar
Shavell, S., “The Judgment Proof Problem,” International Review of Law & Economics 6 (1986): 4558, at 45 (“An injurer will treat liability that exceeds his assets as imposing an effective financial penalty only equal to his assets....”).CrossRefGoogle Scholar
11 U.S.C. § 362.Google Scholar
11 U.S.C. § 524.Google Scholar
11 U.S.C. § 502 (allowed unsecured claims), 726 (distribution of estate property).Google Scholar
11 U.S.C. § 365.Google Scholar
Westbrook, J. L., “A Functional Analysis of Executory Contracts,” Minnesota Law Review 74 (1989): 227337, at 246 (“The first concrete consequence of the equality principle is that the trustee can breach (reject) a contract profitably far more often than can other contract parties because the trustee pays only a fraction of contract damages rather than the full amount of the Other Party's breach loss. From that simple proposition flows most of the economic “magic” associated with bankruptcy contract doctrine”) See also, Andrew, M. T., “Executory Contracts Revisited: A Reply to Professor Westbrook,” University of Colorado Law Review 62 (1991): 1–35 (“But while unnecessary, rejection is also harmless: It does not make the contract obligation somehow vanish, and its ‘breach’ consequence does nothing more than create a claim. Thus, whether the contract is ‘executory’ or not, the result is the same: The non-debtor party has a claim”).Google Scholar
11 U.S.C. § 506.Google Scholar
11 U.S.C. § 724.Google Scholar
11 U.S.C. § 363(f).Google Scholar
11 U.S.C. § 363(e).Google Scholar
See Gouveia v. Tazbir, 37 F.3d 295, 299 (7th Cir. 1994) (holding that debtor is unable to sell land free and clear of restrictive covenants).Google Scholar
362 F.3d 603 (9th Cir. 2003).Google Scholar
322 F.3d 283 (3rd Cir. 2003).Google Scholar
327 F.3d 537 (7th Cir. 2003).Google Scholar
For an extreme example, see Precision Industries, Inc. v. Qualitech SBQ, LLC, 327 F.3d 537 (7th Cir., 2003), reh'g denied, 2003 U.S. App. LEXIS 10626 (7th Cir., May 7, 2003), where a debtor was allowed to sell leases under section 363(f) without formally assuming or assignint them under section 365.Google Scholar
11 U.S.C. § 362(b)(4).Google Scholar
1 U.S.C. § 510(c).Google Scholar
Canterbury v. Spence, 464 F.2d 772 (1972). For a discussion of informed consent in healthcare settings, see Schneider, C. E., The Practice of Autonomy: Patients, Doctors, and Medical Decisions, (New York: Oxford University Press, 1998), 8792; Goldstein, J., “For Harold Lasswell: Some Reflections on Human Dignity, Entrapment, Informed Consent and the Plea Bargain,” Yale Law Journal 84 (1975): 683–703, at 690–94; Schuck, P.H., “Rethinking Informed Consent,” Yale Law Journal 103 (1994): 899–959, at 902–04; Twerski, A. D. and Cohen, N. B., “The Second Revolution in Informed Consent,” Northwestern University Law Review 94 (1999):1–49, 2–5.Google Scholar
Janger, , “Muddy Property,” supra note 2 (“Property rule or liability rule, the result is the same. Customers give their information away for free”).Google Scholar
Janger, “Anticommons,” supra note 2.Google Scholar
Heller, M. A., “The Boundaries of Private Property,” Yale Law Journal 108 (1999): 11631223, at 1173–74; Heller, M. A., “The Tragedy of the Anticommons: Property in the Transition from Marx to Markets,” Harvard Law Review 111 (1998): 621–688, at 665–67.CrossRefGoogle Scholar
Schwartz, P. M., “Property, Privacy, and Personal Data,” Harvard Law Review 117 (2004): 20552128.CrossRefGoogle Scholar
Janger, , “Anticommons,” supra note 2 at 922–26.Google Scholar
The Leahy Amendment can be found in sections 231 and 232 of the conference report to the Bankruptcy Abuse Prevention and Consumer Protection Act of 2002. See H.R. CONE REP. No. 107-617, at 51–52 (2002).Google Scholar
Janger, , “Anticommons,” supra note 2 at 928–29. Janger, , “Muddy Property,” supra note 2 at 1873–75.Google Scholar
As a remedy, I have recommended the use of mandatory set of defaults tailored to particular contexts and based on Fair Information Practices, or “FIPS.”Google Scholar