Hostname: page-component-8448b6f56d-qsmjn Total loading time: 0 Render date: 2024-04-19T13:35:28.277Z Has data issue: false hasContentIssue false

Informed Consent, Body Property, and Self-Sovereignty

Published online by Cambridge University Press:  01 January 2021

Abstract

Recent cases involving biosamples taken from indigenous tribes and newborn babies reveal the emptiness of informed consent. This venerable doctrine often functions as a charade, a collective fiction which thinly masks the uncomfortable fact that the subjects of human research are not actually afforded full information regarding the types of research that may be contemplated, nor do they provide meaningful consent. But if informed consent fails to provide adequate protection to the donors of biological materials, why not turn to principles of property law? Property is power, yet current law permits everyone except for those who donate biological materials to possess property rights. The reluctance to invoke property probably stems from fears of resurrecting slavery and the commodification of human beings. But ironically, avoidance of property transforms the subjects of human research into objects that can be owned only by others, resulting in new forms of oppression and exploitation. Human research subjects are autonomous individuals who should not only possess the power to contribute their biological materials, but also the right to help control the course of research, and to share in the resulting benefits or profits. Conferring body property might enable research subjects to regain power and a measure of self-sovereignty.

Type
Symposium Articles
Copyright
Copyright © American Society of Law, Medicine and Ethics 2016

Access options

Get access to the full version of this content by using one of the access options below. (Log in options will check for institutional or personal access. Content may require purchase if you do not have access.)

References

Skloot, R., The Immortal Life of Henrietta Lacks (New York: Crown Publishers, 2010).Google Scholar
There were a few notable exceptions. Lacks' contributions were acknowledged in Michael Gold's book, A Conspiracy of Cells, Victor McKusick's textbook on Medical Genetics, and the works of Harriet Washington. See Gold, M., A Conspiracy of Cells: One Woman's Immortal Legacy and the Scandal It Caused (New York: State University of New York Press, 1985); Medical Genetics (Victor McKusick and Robert Claiborne, editors) (H.P. Publishing, 1974); H. Washington, Medical Apart-heid: The Dark History of Medical Experimentation on Black Americans from Colonial Times to the Present (New York: Doubleday, 2006); H. Washington, Deadly Monopolies (New York: Anchor Publishing, 2012).Google Scholar
Skloot, R., “Taking the Least of You,” New York Times Magazine, April 16, 2006, at 40.Google Scholar
Skloot, R., The Immortal Life of Henrietta Lacks, the Sequel, New York Times, March 23, 2013.Google Scholar
45 C.F.R. Section 46 (2009). See also Belisle, J., “Recognizing a Quasi-Property Right in Biomaterials,” UC Irvine Law Review 3, no. 3 (August 2013): 767-799, at 778; G. Javitt, “Why Not Take All of Me? Reflections on the Immortal Life of Henrietta Lacks and the Status of Participants in Research Using Human Specimens,” Minnesota Journal of Law, Science & Technology 11, no. 2 (Spring 2010): 713-754, at 731–34.Google Scholar
See Skloot, supra note 3, at 45.Google Scholar
J. Belisle, supra note 5, at 778.Google Scholar
In contrast to blanket consent, Natalie Ram describes a form of particularized consent known as project-specific consent “under which tissue providers are contacted before each use of their tissues for research in order to provide the opportunity for consent.” According to Ram, project-specific consent “best approaches the paradigm of informed consent, as it makes available to tissue providers the most precise information for a given consent interaction. Because tissue providers consent to one research project at a time, they are necessarily more informed about the specific research projects in which their tissues are used.” Nevertheless, Ram declares, “Although theoretically possible, project-specific consent has not been commonly used in the context of human tissue research because of its administrative burdens to researchers…[such as] maintaining accurate phone or mail records and tracking tissue providers and their consent decisions.” Ram, N., “Tiered Consent and the Tyranny of Choice,” Jurimetrics Journal 48, no. 2 (Spring 2008): 253-284, at 265–266.Google Scholar
See, e.g., Moore v. Regents of the University of California, 793 P.2d 479, 483 (Cal. 1990) (“The second important policy consideration is that we not threaten with disabling civil liability innocent parties who are engaged in socially useful activities, such as researchers who have no reason to believe that their use of a particular cell sample is, or may be, against a donor's wishes.”). Similar concerns regarding administrative burdens, as well as the possibility for discrimination, motivated the district court's rejection of a patient's right to choose whom and for what purposes to donate tissue in Washington University v. Catalona, 437 F. Supp. 2d 985, 1002 (E.D. Missouri 2006) (stating that the “integrity and utility of all biorepositories would be seriously threatened if [research participants] could move their samples from institution to institution any time they wanted,” and that allowing a research participant “to choose who can have the sample, where the sample will be stored, and/or how the sample can be used is tantamount to a blood donor being able to dictate that his/her blood can only be transfused into a person of a certain ethnic background, or a donated kidney being transplanted only into a woman or man. This kind of ‘selectiveness’ is repugnant to any ethical code which promotes medical research to help all of mankind.”)Google Scholar
See Ram, supra note 8, at 253 (contending that new evidence emerging from the fields of behavioral economics and consumer psychology suggests that too much choice can actually provoke anxiety among decision makers, causing them to experience information overload, make arbitrary choices, or refrain from choosing altogether, resulting in systematically lower quality decision making).Google Scholar
Zoe Laufer, D., Informed Consent. (Playscript; copy in author's files, avaialable upon request.)Google Scholar
Harmon, A., “Indian Tribe Wins Fight to Limit Research of Its DNA,” New York Times, April 21, 2010.Google Scholar
Tilousi v. Arizona State Univ. Bd. of Regents, No. 04-CV-1290, 2005 WL 6199562, at *1 (D. Ariz., March 3, 2005).Google Scholar
See Harmon, supra note 12.Google Scholar
Tilousi v. Arizona State Univ. Bd. of Regents, No. 04-CV-1290, 2005 WL 6199562, at *1, *3 (D. Ariz., March 3, 2005).Google Scholar
See Harmon, supra note 12.Google Scholar
See Drabiak-Syed, K., “Lessons from Havasupai Tribe v. Arizona State Board of Regents: Recognizing Group, Cultural, and Dignitary Harms as Legitimate Risks Warranting Integration into Research Practice,” Journal of Health & Biomedical Law 6, no. 2 (2010): 175-225..Google Scholar
Cohen, M., “Property and Sovereignty,” Cornell Law Review 13, no. 1 (1927-28): 830.Google Scholar
See Goodwin, M., “Altruism's Limits: Law, Capacity, and Organ Commodification,” Rutgers Law Review 56, no. 2 (Winter 2004): 305-407, at 361 (“Critics suggest it would be a mistake…to apply the language of property to the human body. They caution that applying the concept of property to the human body would be as morally reprehensible as slavery…“).Google Scholar
Beleno v. Texas Dept. of State Health Services, U.S. District Court for W. Dist. Texas (March 2009).Google Scholar
Bearder v. Minnesota, 806 N.W. 2d 766 (Minn. 2011).Google Scholar
See Suter, S., “Did You Give the Government Your Baby's DNA? Rethinking Consent in Newborn Screening,” Minnesota Journal of Health Law, Science & Technology 15, no. 2 (Spring 2014): 729790.Google Scholar
See Lewis, M. H. et al., “State Laws Regarding the Retention and Use of Residual Newborn Screening Blood Samples,” Pediatrics 127, no. 4 (April 2011): 703712.Google Scholar
See Rao, R., “Property, Privacy and the Human Body,” Boston University Law Review 80, no. 2 (2000): 359460.Google Scholar
See Rao, R., “Coercion, Commercialization, and Commodification: The Ethics of Compensation for Egg Donors in Stem Cell Research,” Berkeley Technology Law Journal 21, no. 3 (2006): 10551066.Google Scholar
Moore v. Regents of the University of California, 793 P.2d 479 (Cal. 1990).Google Scholar
Greenberg v. Miami Children's Hospital, 264 F. Supp. 2d 1064 (S.D. Fla. 2003).Google Scholar
Washington University v. Catalona, 490 F.3d 667 (8th Circuit 2007).Google Scholar
See Rao, R., “Genes and Spleens: Property, Contract or Privacy Rights in the Human Body,” Journal of Law, Medicine & Ethics 35, no. 3 (2007): 371382.CrossRefGoogle Scholar
In Myriad Genetics, the Supreme Court prohibited the patenting of human genes that are merely isolated and purified forms of the DNA discovered and sequenced from the human body, on the grounds that they are products of nature, rather than man-made inventions. But the Court suggested that certain forms of human DNA that do not exist in nature or have been modified or transformed by the hand of man may continue to be patentable. Association for Molecular Pathology v. Myriad Genetics, 133 S.Ct. 2107 (U.S. 2013).Google Scholar
Perez v. Commissioner, 144 T.C. 4 (2015).Google Scholar
Jones, A., “Putting a Price on a Human Egg,” Wall Street Journal, July 26, 2015. In 2016, the American Society for Reproductive Medicine (ASRM) settled the price-fixing lawsuit, agreeing to delete language in the egg donor compensation guidelines alleged to violate antitrust laws. J. Gershman, “Fertility Industry Group Settles Lawsuit Over Egg Donor Price Caps,” Wall Street Journal, Feb. 3, 2016.Google Scholar
Bailey, E., “Wilson Signs Bill Making Theft of Human Eggs a Crime,” LA Times, September 26, 1996.Google Scholar
Skloot, R., The Immortal Life of Henrietta Lacks (New York: Crown Publishers, 2010): at 9.Google Scholar
See Almeling, R., Sex Cells: The Medical Market for Eggs and Sperm (Berkeley: University of California Press, 2011) (depicting gendered ways in which payments to sperm donors are framed as remuneration for an easy “job”, as opposed to egg donors, who are encouraged to view egg donation as the ultimate “gift”).Google Scholar
Blackstone, W., Commentaries on the Laws of England, volume 2, at 2.Google Scholar
Williams, J., “The Rhetoric of Property,” Iowa Law Review 83, no. 2 (1998): 277-361, at 280 (describing “the gap between the political rhetoric of absolute property rights and the practice of limited property rights.”).Google Scholar
See United States v. Kriesel, 720 F.3d 1137 (9th Circuit 2013) (holding that convicted offender who had completed his period of supervised release had standing to seek return of the blood sample taken from him for forensic analysis and acknowledging that Kriesel was “seeking the return of ‘property.’…[T]he blood sample itself is a tangible object, and the genetic code contained within the blood sample is information.”)Google Scholar
See, e.g., Ram, N., “DNA by the Entirety,” Columbia Law Review 115, no. 4 (May 2015): 873-939 (comparing shared familial interests in DNA to tenancy by the entirety, and drawing upon this ancient property framework to grapple with overlapping interests in modern genetic identification and analysis); L. Maria Franciosi and A. Guarneri, “The Protection of Genetic Identity,” Journal Civil Law Studies 1, no. 1 (2008): 139-188, at 186 (suggesting that “regulations pertaining to the theme of joint ownership (joint tenancy, co-ownership) could be applied. These norms in fact would allow disciplining potential conflicts among individuals that hold the same right...”); E. Murphy, “Relative Doubt: Familial Searches of DNA Databases,” Michigan Law Review 109, no. 3 (2010): 291-348, at 336 (drawing an analogy “to the joint interest held by property owners who share common space”).Google Scholar
Hudson, K. and Collins, F., “Biospecimen Policy: Family Matters,” Nature 500, no. 7461 (August 2013): 141142.Google Scholar
Chrysler, D., McGee, H., Bach, J., Goldman, E., Jacobson, P., “The Michigan Biotrust for Health: Using Dried Bloodspots for Research to Benefit the Community While Respecting the Individual,” Journal of Law, Medicine & Ethics 39, No. S1 (2011) 98101.Google Scholar
Winickoff, D. and Winickoff, R., “The Charitable Trust as a Model for Genomic Biobanks,” New England Journal of Medicine 349, no. 12 (2003): 11801184.Google Scholar