The Case for Caution - Being Protective of Human Dignity in the Face of Corporate Forces Taking Title to Our DNA - Barry Brown

hirteen years ago, commenting on the treatment of the human body and its cell lines as patentable com- T modities, Mary Taylor Danforth wrote:

Research with human cells that results in signifi- cant economic gain for the researcher and no gain for the patient offends the traditional mores of our society in a manner impossible to quantify Such research tends to treat the human body as a com- modity - a means to a profitable end. The dig- nity and sanctity with which we regard the human whole, body as well as mind and soul, are absent when we allow researchers to further their own interests without the patient’s participation by us- ing a patient’s cells as the basis for a marketable product.’

In his insightful article, David Resnik would have us travel further down the path of allowing the patenting of DNA in order to advance scientific research and the welfare of humankind. Dr. Resnik suggests that that the acquisition of such proprietary rights in DNA research must proceed cautiously2 However, he argues that while commodification of human tissue raises the threat of the denigration of human dignity, patenting DNA in and of itself does not have the effect of reducing the human population to the equivalent of a retail in~entory.~ It is still possible, Resnik contends, to treat human tissue and body parts as having a market value while maintaining the non-market value of humans as a whole.4 And, while cautious of the slippery slope that could lead to the enslavement of the human body, mind, and spirit, Dr. Resnik balances these risks against the possibility of hin-

Journal o f h w , Medicine &Ethiw, 29 (2001): 166-169. 0 2001 by the American Society of Law, Medicine & Ethics.

dering the advancement of science and decides in favor of science. Advocating that no restrictive legislation be passed (regarding DNA patents of anything less than the whole hu- man genome) until more is specifically known, he remains hopeful that the threat to human dignity arising from commodification of the human body will not extend to an outright violation of human dignity, at least for the time being?

While I do not fault Dr. Resnik‘s analysis - particu- larly in light of the decision of the U.S. Supreme Court in Diamond v. Chakrabarty,6 which permitted human cell lines (and by inference, the products of genetic engineering) to be subject to patent protection - I am nevertheless not yet so confident that there does not exist the potential for serious harm to individuals and ethnic and social groups as a result of giving corporate forces control over component human tissue, genes, and DNA. As Judge Mosk points out in his dissent to the majority decision in Moore v. Regents of the University of California,’ one of the ethical imperatives of our society is the “prohibition against indirect abuse of the body by its economic exploitation for the sole benefit of another pers~n.’’~ To the extent that we find socially accept- able the commercialization of human tissue in any form, we must also acknowledge that serious social and economic questions are raised that demand resolution or have the po- tential for threatening the fabric of modern society,

CONCERNS RAISED BY PRIVATE CONTROL OF DNA The foregoing is not an overstatement. Privatization of an essential resource (here, components of the human body) raises at least two concerns:

Economic application: Who will benefit and who will be denied the use of the resource, particu- larly, where resources are limited?

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Social application: Which groups will be al- lowed to benefit from the therapeutic advantages of privately controlled DNA?

Unless these fundamental questions are answered, sci- entific discovery coupled with economic pragmatism will exist apart from social benefit. History shows that the conse- quence to this can be disastrous. The world has witnessed waves of scientific advances accompanied by human exploi- tation. The European Age of Exploration is but one example where science and human initiative compromised the ethi- cal imperative to respect the human condition. Exploration, essentially “scientific” in its time, led to one of the most extreme forms of economic exploitation - slavery - for the benefit of those who secured property rights in the United States, the Caribbean, Africa, Mexico, and South America. In Resnik’s terms, human slavery represents the complete commodification of the human condition through market force^.^ While commodification of the human body in the form of outright slavery is an obvious denigration of human dignity, the scientific advances achieved by the Human Ge- nome Project and the advances in genetic therapies that have led to the patenting of DNA sequences will, in my opinion, pose no less of a threat by putting proprietary control of essential aspects of the human condition (physical appear- ance, strength, and intelligence) into the hands of profit-making institutions and market forces.

Similar concerns were raised a decade ago in an analo- gous context in an article by Dan W Brock.’O Brock‘s focus was the indiscriminate disclosure of information produced in the mapping of the human genome, but his primary con- cern was human dignity.” On the premise that mapping the human genome would eventually lead to the ability to isolate monogenic and multigenic sequences responsible for symp- tomatic and asymptomatic disease conditions, such as Huntington’s disease and breast cancer, Brock raised three concerns arising from the failure to regulate the disclosure of such information:

The first concerns issues of equality and, more specifically, equality of opportunity The second concerns our conception of ourselves as respon- sible agents, a conception that underlies many of our moral beliefs and practices, as well as impor- tant legal practices in areas such as criminal law The third ethical issue concerns the likely under- mining of a clear standard of normality and its consequent effect on how we define ourselves and our identities in a psychological sense. l2

Undermining equality of opportunity An assault on human dignity arising with respect to equality of opportunity occurs under circumstances of scarcity, in a world in which not all individuals who want particular goods

or attributes can have them.I3 To the extent individuals ad- vance or fail in a society because of differences brought about by uneven application of genetic therapies under private con- trol, those denied such benefits will claim a lack of equal opportunity As opposed to past moments in history when uneven opportunity could be rationalized on the basis of chance choices in individual selection, we are now envision- ing a time when these choices will no longer be by chance, but deliberate -although only for the wealthy and powerful few. With the means for advancing traits in one individual as opposed to another, we will have the ability to create inher- ent inequality among our citizens - among the human race. To the extent that the resources for creating this inequality are vested in private entities whose purposes are motivated by market forces rather than moral or social criteria, the threat to equality of opportunity becomes extreme.

Denigrating our role as responsible agents The second area of assault on human dignity arising when DNA comes under private control occurs in connection with the denigration of our roles as responsible agents. Brock argues:

Our conception of ourselves [is] as responsible agents and more specifically, as morally and le- gally responsible for our actions, for the lives we live and for the kinds of people we become. The conception of ourselves as responsible agents is reflected in common moral beliefs and important social and legal institutions and practices that place great value on indwidual self determination.. . . The exercise of self determination involves making sig- nificant decisions about our lives for ourselves according to our own values and aims. This con- ception of ourselves as responsible, self-reflective agents is embodied in our practice of holding our- selves and others morally and legally responsible for our actions.14

To the extent that private parties control the means to alter genetic traits rangng from the minimal (e.g., eye, hair, and body structure) to the extreme (e.g., intelligence and aggressive personality), humans yield their self-identity to others and become not responsible agents, but functionally subservient to those who have the means to alter these traits. In the ultimate manifestation of genetic irresponsibility, the criminal is no longer responsible for his or her conduct be- cause either lower levels of intelligence or aberrant behavior was genetically manipulated to achieve a particular goal or purposely allowed to exist and not therapeutically corrected. In either case, the liability for criminal activity arguably falls not on the individual, but on outside forces, including the proprietary organization which had within its power the

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means for altering the person’s aberrant conduct. Certainly, no greater assault on human dignity could occur than under- mining our belief in ourselves as responsible social beings.

Weakening a clear standard of normality Finally, the psychology of our own beings, our sense of self, and our interrelationship with others, all of which Brock refers to as the “standard of normal human function,”” are weakened by placing ultimate control of the elements of health and disease with private institutions. To the extent that pri- vate economic entities have the ability to test for, identify, and potentially cure a disease, either somatically or by eradi- cating the same from the germ line, these organizations will amass tremendous power in relationship to society in gen- eral and to those individuals who will perceive themselves as either ill or socially inadequate in particular. Such individu- als will become dependant on outside market resources to identify and cure their condition.

The psychological impact of identifiable and curable genetic conditions has already manifested itself in propri- etary testing programs used to identify asymptomatic predis- position toward a disease. Testing for the BRAC gene in popu- lations of Ashkenazi Jewish women is only one, albeit dra- matic, example of the modern trend toward the unregulated establishment of population groupings of the asymptomatically ill who in turn become reliant upon the entities who undertake the testing and, ultimately, the thera- pies to remediate the identified condition.

PRESERVING HUMAN DIGNITY Notwithstanding the current pressure to privatize advances in genetic science, courts and legislatures have been histori- cally mindful of the continuing need to protect human iden- tity and human dignity from such wholly material consider- ations. With the rise of individualism, protection of human dignity has advanced in fits and starts in competition with rights to private property over the past millennium. In soci- eties where property rights did not exist outside the sover- eign - where all authority was vested in an autocratic ruler -the very concept of human dignity was an inappropriate consideration for public policy. Within such social structures (Norman England in the eleventh century16 is a good ex- ample), the modem concept of human dignity could not evolve because individuals lacked control over their own lives and destinies. These societies may have condoned outright sla- very or permitted indentured servitude and thereby elimi- nated self-expression and control of one’s destiny by impos- ing a repressive caste system. In such societies, human dig- nity was achieved not in this world, but in the next.

Whether because of the rise of modern religions with their concomitant emphasis on the intrinsic value of the in- dividual, or because of the emergence of a broad market

economy in which each person is free to amass things of value which can be exchanged for other commodities, or perhaps because of the acceptance of social philosophies that support the value of individualism as opposed to communitarianism or autocracy, we have come to live in an age in which human individuality is supported by social and governmental institutions and by our religions and moral philosophers. In such an environment, human dignity be- comes a cause of immense concern and anything that de- tracts from our right to be responsible actors and self-deter- mined participants in society is carefully monitored by our public institutions, including our legislatures and courts.

The necessity of a governmental response While our case law and statutes acknowledge that traditional property rules should not apply to our body or our body parts” and that we do not own our organs and tissues in the traditional sense,’* our legislative and judicial pronounce- ments are rife with examples of imposing benefits and con- trols on the use of human tissue and organs with a view toward maintaining human individuality and digniry.19 The Uniform Anatomical Gift Act expressly confirms a patient’s right to elect donation of his or her organs?” Furthermore, a majority of courts and legislatures have rejected the doctrine of presumed consent to allow for the removal and use of organs and tissues without the consent of the individual or, in the case of a decedent, the authorized family membetZ1 Similar autonomous and proprietary authority has been rati- fied for determining the disposition of cryogenically preserved embryoP and postmortem disposition of gametic

The import of the court decisions and legislative pro- nouncements noted above confirm that autonomous choice and propriety rights are properly connected to the disposi- tion of the person, his organs, and his tissue. To the extent that an individual loses proprietary control over his body, as in the case of allowing property rights in the human body to be patented by others, elements of human identity and quali- ties of humanness are undermined. If this analysis is correct, the commodification of human DNA may be more than a mere threat to human dignity, but, in fact, a violation. Ac- cordingly, we must establish a structure to monitor the in- cursions into human identity arising from the privatization of DNA and set limits that will protect human dignity.

The necessity of acknowledging the individual I take it as a given that the Patent and Trademark Office, the courts, and Congress will be reluctant to reverse the applica- tion of the Diamond decision, will continue to permit pat- enting of DNA, and will allow scientists their moment of enrichment for their discoveries. Given this state of affairs, it becomes essential that we acknowledge the role of the indi- vidual in providing the DNA and genetic materials and that

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such person or persons be credited with a portion of the property interests arising from the discovery and invention. As Judge Mosk points out in his dissent in Moore:

m h e uniqueness of the product that gives rise to the patentability stems from the uniqueness of the original cell. A patient’s claim to share in the profits flowing from a patent would be analogous to that of an inventor whose collaboration was essential to the success of a resulting product. The patient was not a coequal, but was a necessary contribu- tor ....”

If we permit scientists and their corporate supporters to acquire proprietary interests in resources retrieved from in- dividuals, we should create an egalitarian mechanism for distributing the benefits of those resources back to their sources. No event in science or medicine speaks louder than the genetic revolution in favor of creating a universal system of access and distribution of its benefits. The recognition of any individual or group involvement will add to, rather than detract from, the dignity of those whose body tissue will make genetic advances possible.

CONCLUSION Legislatures should not be hesitant to consider laws to guide and restrict the use of genetic material. We should not fear making distinctions between permitting research and devel- opment on the one hand and imposing reasonable restric- tions on patent applications - particularly profit-making activities - on the other.

We have long accepted the role of government in limit- ing our use of all kinds of property, including our lands, personal effects, and professional licenses. For example, zon- ing, environmental controls, and land-use plans establish commonly accepted limits on the range of our rights to use real property. Similar restrictions on use and profit are in order with respect to genetic property.

If we can accept societal limits on the broad spectrum of our existing property rights, it should be a foregone conclu- sion that we will regulate the application of genetic discover- ies to preserve our environment and to preserve our human identity and dignity. Our legislatures and courts may at first be overly restrictive in regulating every aspect of genetic test- ing and therapy and, to some, be hindering the progress (and profit) of science. But in the early stages of this scientific

revolution, such caution will mean the protection of human dignity and our identity, and ultimately the survivability of the species.

REFERENCES 1. M.T. Danforth, “Cells, Sales and Royalties: The Patient’s

Right to a Portion of the Profits,” Yale Law and Policy Review, 6 (1988) 179.

2. D.B. Resnik, “DNA Patents and Human Dignity,”]ournal of law, Medicine &Ethics, 29, no. 2 (2001): 152-65, at 163.

3. Id. at 152 4. Id. at 158-59. 5 . Id. at 163. 6. Diamond v. Chakrabarty, 447 U.S. 303 (1980). 7. Moore v. Regents of University of California, 793 E2d 479

8. Id. at 515. 9. Resnik, supra note 2, at 157.

(Cal. 1990).

10. D.W Brock, “The Human Genome Project and Human

11. Id. at 8. 12. Id. at 8. 13. Id. at 9. 14. Id. at 13. 15. Id. at 19. 16. The interrelationship among the advancement of indi-

vidual property rights, individualism, and human dignity can be examined historically in thirteenth century England in a remark- able series of common law decisions and statutes of Parliament, perhaps the most notable of which is the statute Quia Emptores (1290), which broke the chain of subinfeudinations and formally sanctioned the creation of freehold estates.

17. See, e.g., Brotherton v. Cleveland, 923 E2d 477 (6th Cir. 1991); Uniform Anatomical Gift Act, Cal. Health & Safety Code

18. Brotherton v. Cleveland, 923 F.2d 477, 480 (6th Cir. 1991).

19. Uniform Anatomical Gift Act, Cal. Health & Safety Code § 7153(a)(l); Cal. Health & Safety Code § 1606. As Judge Mosk points out, neither statute means “that a person cannot sell his blood or, by implication, that his blood is not his property ... organs and blood [are] property that can be sold in a variety of circumstances.” Moore v. Regents of University of California, 793 E2d 479, 518 (Cal. 1990) (Mosk, J., dissenting).

20. See, e.g., Brotherton v. Cleveland, 923 E2d 477 (6th Cir. 1991); Uniform Anatomical Gift Act, Cal. Health & Safety Code §§ 7150-7156.5.

21. Brotherton v. Cleveland, 923 E2d 477 (6th Cir. 1991). 22. Davisv. Davis, 842 SW2d 588 (Tenn. 1992);A.Z. v. B.Z.,

23. Hecht v. Superior Court, 59 Cal. Rptr. 2d 222 (Cal. Ct.

24. Moore v. Regents of University of California, 793 E2d 479,

Identity,” Houston Law Review, 29 (1992): 8.

§§ 7150-7156.5.

725 N.E.2d 1051 (Mass. 2000).

App. 1996).

512 (Cal. 1990).

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