[tt] The Journal of Law, Medicine & Ethics: Symposium on Genetic Justice (several articles)

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The Journal of Law, Medicine & Ethics: Symposium on Genetic Justice
Fall 2007 - Vol. 35 Issue 3 Page 352-508

INTRODUCTION

Genome Justice: Genetics and Group Rights
Rebecca Tsosie and Joan L. McGregor
pages 352-355

SYMPOSIUM ARTICLES

Population Genomics and Research Ethics with Socially Identifable Groups
Joan L. McGregor
pages 356-370

Genes and Spleens: Property, Contract, or Privacy Rights in the Human Body?
Radhika Rao
pages 371-382

Human Genetics Studies: The Case for Group Rights
Laura S. Underkuffler
pages 383-395

Cultural Challenges to Biotechnology: Native American Genetic Resources and 
the Concept of Cultural Harm
Rebecca Tsosie
pages 396-411

Narratives of Race and Indigeneity in the Genographic Project
Kim TallBear
pages 412-424

The Human Genome as Common Heritage: Common Sense or Legal Nonsense?
Pilar N. Ossorio
pages 425-439

Partnership in U.K. Biobank: A Third Way for Genomic Property?
David E. Winickoff
pages 440-456

[All other articles are omitted.]

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Genome justice: genetics and group rights.(INTRODUCTION).
Rebecca Tsosie and Joan L. McGregor.

The accelerated rate of innovation within biotechnology and increasing
importance of human genetic information has triggered complex and
compelling issues for researchers, lawyers, health professionals, and
bioethicists. Although biotechnology can and does hold great capacity for
improvements in individual health care, genomic research on populations
has increasingly inspired controversy because of the implications of such
research for particular groups. For example, the mapping of the Human
Genome inspired researchers to probe the variability among human
populations, defined variously according to conceptions of ethnic, racial,
social, and political identity. Not surprisingly, studies such as the
Human Genome Diversity Project have inspired a vehement debate between
proponents of "population genomics," who argue that research on specific
groups can generate valuable knowledge about genetic disorders, possible
cures, and the origin and migration patterns of distinctive peoples, and
opponents of such research, who argue that the research poses distinctive
risks and disadvantages for targeted groups and may even resurrect
now-discredited "scientific" theories of race and human capacity.

This volume is the product of a 2004 conference titled "Bioethics,
Genetics and Group Rights," held at Arizona State University and sponsored
by the Lincoln Center for Applied Ethics. Our purpose in organizing the
conference was to explore the moral and legal issues that result from
undertaking genetic research on populations and distinctive groups. We
invited a range of scholars, professionals, and community members who had
been involved with such research projects and elicited a discussion about
the promises and the challenges of population genomics. We invited a
subset of conference participants to submit papers for an edited volume on
the topic and had these scholars share and develop their ideas in relation
to the discussion that emerged from the conference, as well as new
developments in the field that emerged shortly after the symposium.

The 2004 conference revealed a great deal of uncertainty about fundamental
issues, such as what constitutes a "group" or "population" for purposes of
studies in "population genomics," and what the appropriate legal framework
is for addressing the rights of research participants, who are members of
particular groups, as well as the rights of the groups themselves. We
found that the construction of the relevant and identifiable "group" or
"population" was highly contested as a legal, social, political, and
cultural matter. Moreover, the process of determining the "benefits and
harms" of such research was also highly contested, including controversy
about the nature of the harms, the notion of "culturally specific" harm,
and the assessment about the "benefits" of such research and the
distribution of those benefits. We found that population genomics studies
raised a number of compelling legal and ethical issues, such as the
applicability of the concept of "informed consent" to groups, and the
ability of marginalized groups to protect themselves from the potential
harms of such research. For example, scholars and professionals who worked
with African American communities documented the continuing legacy of
overt discrimination in health care and ethically problematic research,
such as the Tuskegee Experiment. Similarly, scholars and professionals who
worked with Native American groups reported a similar history of negative
experiences with public health care policies, but pointed out that Native
peoples also enjoy a distinctive political status as separate governments
and have specific rights and institutions to express those rights that are
different from any other group. Thus, the legal and ethical issues could
be considerably different from group to group based on political status,
as well as cultural and historical differences.

The main purpose of this symposium is to explore many of the significant
moral and legal issues that arise from undertaking genomic research on
populations and distinctive groups. There has been a paucity of research
on cultural value differences among groups with respect to genetic
research, and a lack of attention to the cultural disputes over gathering,
using, and interpreting genetic information from population groups. The
various contributors to this academic symposium have outlined the relevant
history and framework for this topic and have also advanced new and
different conceptions of the rights, duties, and responsibilities
triggered by genomic research.

Joan McGregor's article, "Population Genomics and Research Ethics with
Socially Identifiable Groups," (1) leads the symposium by describing the
historical context of scientific research on groups, the current legal and
ethical framework for evaluating the appropriateness of genomics research,
and the moral issues attendant to research on socially identifiable
populations. McGregor points out that cultural differences among groups
inspire different "views about health, medicine, and biological
materials," and those views are often different from Western notions.
According to McGregor, these differences make "research design, the
process of informed consent, and collecting and using genetic materials
from groups morally problematic" if we are committed to respecting each
group's unique values. Under the current legal and moral framework,
McGregor argues that group-specific risks are not adequately considered by
researchers or the Institutional Review Boards who review that research.
She argues for a change in the federal guidelines in substance and
procedure that is applicable to genetic research on socially identifiable
groups.

Radhika Rao of the University of California, Hastings College of Law,
provides a focused appraisal of the law's current inability to adequately
address rights in the human body in "Genes and Spleens: Property,
Contract, or Privacy Rights in the Human Body?" (2) Rao claims that the
legal status of the human body is hotly contested and the appropriate
legal framework for defining such rights remain in a state of confusion
and chaos. She points out that existing case law sometimes treats the body
as an object of property, sometimes deals with it under the rubric of
contract, and sometimes applies privacy rights to protect aspects of the
body's perceived "human identity." Rao explores several contemporary cases
dealing with biomedical research and the respective rights of researchers
and subjects, and concludes that these cases appear to permit ownership of
the body by everyone except the person who provides the "raw materials."
Rao argues that property law privileges those who plan to commodify and
commercialize human genes over those who wish to make genetic resources
freely available to all. Although concepts of privacy and contractual
rights might mitigate the harm to human subjects in specific cases, these
legal constructs have not yet been able to overcome the powerful property
paradigm, which provides the "complete bundle of rights that are
enforceable against the whole world" Rao concludes that because existing
eases favor a strong notion of property rights on the part of researchers
and research institutions, the freedom of human beings to contract and to
have their privacy interests honored operates at a purely theoretical
level, and individuals remain vulnerable to exploitation.

In an attempt to transcend the limitations of these existing paradigms,
Laura Underkuffler of Duke University Law School promotes the concept of
"group rights" in relation to genomic research in "Human Genetics Studies:
The Case for Group Rights" (3) Underkuffler engages the "idea of group
control over the collection, testing, and disposition of the biological
materials of its members" and notes that this idea is routinely met with
"skepticism or outright rejection by many researchers, ethicists, and
legal scholars." She believes that there is an underlying issue that
informs such responses, namely "to what extent are our responses to claims
of group rights hampered by our bringing to the table (consciously or
unconsciously) a model which is structured to acknowledge only individual
concerns?" Underkuffler posits that the resistance to group rights in
genetic research may be more the product of an inability to imagine such
rights than the product of truly substantive concerns. Underkuffler
observes that group control is an aspect of many existing legal theories
and is often viewed as giving rise to an enforceable legal right. Thus,
although there may be objections to a specific assertion of group control
of genetic testing, there is not "generally valid objection, as a matter
of theory, to the implementation of this right."

Rebecca Tsosie addresses Underkuffler's challenge by exploring the complex
issues related to genetic research on Native peoples in "Cultural
Challenges to Biotechnology: Native American Genetic Resources and the
Concept of Cultural Harm." (4) Tsosie probes the disconnect between
Western and indigenous normative frameworks used to assess the appropriate
use of blood and tissue samples taken from Native peoples, as well as the
appropriateness of securing information from these human resources. Tsosie
points out that the secular systems of ethics developed to evaluate the
morality of biomedical research, like the concepts of property and privacy
which are used to construct the rights of litigants in American court
systems, are inadequate to address the interests of Native peoples in
being protected from the potential harms of genetic research. For example,
claims made by a Native individual or group that are perceived to be
asserting a "cultural" or "spiritual" harm based on the alleged "misuse"
or "mishandling" of blood, tissue, or knowledge gained from DNA analysis
are not cognizable within existing legal theories. Tsosie claims that the
interests of Native groups cannot be accurately understood or assessed
within our legal system unless we attempt to understand the different
normative conceptions of "property," "ownership," and "privacy" that exist
for these groups. Tsosie situates the issue of Native rights to genetic
resources within a larger "cultural rights" framework that is capable of
evaluating distinctive claims for cultural harm. She concludes that "along
with new technologies, there is a need to formulate new concepts of
rights" and suggests an "intercultural framework of accommodation based on
theories of intergroup equality and fundamental human rights."

Kimberly TallBear of Arizona State University provides a study of how
genetic research on Native peoples is used to promote the goals of Western
researchers and ties this into a critique of the "stories" told by Western
science in "Narratives of Race and Indigeneity in the Genographic
Project." (5) According to TallBear, the Genographic Project aims to map
human genetic diversity by sampling 100,000 "indigenous and traditional
peoples." The study relies on five key narratives to describe its
research: for example, that "we are all African," that "genetic science
can end racism," and that "indigenous people are vanishing." Through an
analysis of Web sites, video, news articles, and press interviews with
project organizers, TallBear shows how Genographic narratives keep alive
"much critiqued, yet longstanding notions of race and colonial scientific
practice." TallBear compares the goals of the Genographic Project with
similar studies, including the Human Genome Diversity Project, to
illustrate the larger implications of research on indigenous peoples. She
concludes that what is at issue in the Genographic Project and similar
studies is "a contest for meaning and authority." Specifically, who has
the moral and intellectual authority to "determine meanings and
identities?" At the heart of this issue is the "historically colonial
nature of how science has arrived at its origin narratives," and, thus,
the fight for indigenous peoples and communities is to "debate which
meanings and whose meanings inform law and policy." To ensure that
"science, and the state, are more democratic," Native stories must be
heard as clearly as those of anthropologists and geneticists.

Pilar Ossorio of the University of Wisconsin Law School engages the
broader implications of genomic research by exploring the idea that the
human genome belongs to the "common heritage of humanity." In "The Human
Genome as Common Heritage: Common Sense or Legal Nonsense?," (6) Ossorio
claims that there is broad acceptance of the notion "that all human beings
have a profound interest in the human genome, and that we all have a
significant stake in how and whether it is manipulated and in what
principles would guide its commercial exploitation." However, it is
unclear whether those interests can be adequately addressed by designating
the genome as part of our "common heritage." Ossorio maintains that common
heritage doctrines create a form of public property. She explores the
concept of public property and discusses the political and legal history
of the common heritage concept. She then discusses whether the common
heritage designation advances ethical arguments concerning the patenting
of human DNA. Ossorio's analysis differentiates the "Common Heritage
Property Doctrine" from the "Common Heritage Duties Doctrine" and claims
that both doctrines address concerns associated with human genetic
research and genome-derived products. Ultimately, however, Ossorio
concludes that the property rights norm at the heart of the Common
Heritage Property Doctrine is incompatible with the notion of genetic
resources that are "common" to human beings. She finds that, despite
certain challenges, the Common Heritage Duties Doctrine is "better suited
to promote some important values underlying the move to designate the
human genome as a form of public property."

Finally, David Winickoff of the University of California, Berkeley,
discusses a new attempt to "negotiate the ethical and political dilemmas
of genomic property" in "Partnership in U.K. Biobank: A Third Way for
Genomic Property?" (7) Winickoff explains that, as a general rule,
biobanking projects throughout the world lack meaningful forms of
collective representation for donors. According to Winickoff, governance
in U.K. Biobank deserves attention and scrutiny because it is "staking out
a new imagination of the genomic biobank as a common pool resource."
Winickoff maintains that U.K. Biobank's goverance model "reveals both
strengths and weaknesses that may be instructive to genome project
planners" throughout the world. Specifically, the rhetoric of
"partnership" used in the project is "suggestive of a new form of
relation" between research participants and organizers, one which can
articulate a "third way" between "the poles of commodification and
inalienability, market exchange and gift." Winickoff concludes that this
model, informed by notions of agency and corporate accountability to
shareholders, might transcend the idea of "consultation to embrace forms
of direct representation." Consequently, the "joint venture" model for
science and society could "help constitute a just biopolitics for our
age."

The various articles within this symposium develop an understanding of the
key issues that surround competing claims for ownership of human genetic
materials and technological innovations derived from these materials. The
contributors to this symposium maintain a commitment to identifying
current scientific issues and also identifying standards for developing
transformative ethical and legal frameworks to consider these issues. This
symposium demonstrates that the standard frameworks for analysis within
contemporary bioethics and law must be adapted to better address the
emerging cultural, social, and political conflicts over the use of human
genetic material. Together, the articles in this symposium provide a rich
theoretical context within which to formulate new constructs of law and
ethics that can inform our domestic policies in the area of genomics
research.

References

(1.) J. L. McGregor, "Population Genomics and Research Ethics with
Socially Identifiable Groups," Journal of Law, Medicine & Ethics 35, no. 3
(2007): 356-370.

(2.) R. Rao, "Genes and Spleens: Property, Contract, or Privacy Rights in
the Human Body?" Journal of Law, Medicine & Ethics 35, no. 3 (2007):
371-382.

(3.) L. S. Underkuffler, "Human Genetics Studies: The Case for Group
Rights," Journal of Law, Medicine & Ethics 35, no. 3 (2007): 383-395.

(4.) R. Tsosie, "Cultural Challenges to Biotechnology: Native American
Genetic Resources and the Concept of Cultural Harm," Journal of Law,
Medicine & Ethics 35, no. 3 (2007): 396-411.

(5.) K. TallBear, "Narratives of Race and Indigeneity in the Genographic
Project," Journal of Law, Medicine & Ethics 35, no. 3 (2007): 412-424.

(6.) P. N. Ossorio, "The Human Genome as Common Heritage: Common Sense or
Legal Nonsense?" Journal of Law, Medicine Ethics 35, no. 3 (2007):
425-439.

(7.) D. E. Winickoff, "Partnership in U.K. Biobank: A Third Way for
Genomic Property?" Journal of Law, Medicine & Ethics 35, no. 3 (2007):
440-456.

Rebecca Tsosie, J.D., is the Willard H. Pedrick Distinguished Research
Scholar and the Executive Director of the Indian Legal Program at the
Sandra Day O'Connor College of Law at Arizona State University. Joan L.
McGregor, Ph.D., is the Lincoln Professor of Bioethics and the Director of
Bioethics, Policy, and Law Program at the School of Life Sciences and
Philosophy at Arizona State University.