NALSAR UNIVERSITY OF LAW

2019-2020

RESPONSE PAPER

Submitted To: Mr. Sourabh Bharti

Submitted By: Rashi Upadhyay

Roll No: 2019-1LLM-59

INTRODUCTION-
The book Science, colonialism and indigenous people by Laurelyn Whitt focuses on the
imperialism in the present and shows how the knowledge of natural world affects and is affected
by the indigenous people rather than nation states. Part II of this book deals with the case study
of Human Genome Diversity Project (HGDP). HGDP is the project which aims to collect,
analyze and preserve the DNA for future study to learn about the origin and evolution of
humans. This part is based on the information regarding HGDP.

HUMAN GENOME DIVERSITY PROJECT: ETHICAL AND POLITICAL ISSUES-

Chapter 4 of this book named as ‘The rhetoric of research justification’ specifies comments on
the HGDP. The author goes on to explain the various views of scientist, geneticist and different
other people on HGDP in this chapter. The chapter gives a rhetoric which depends on the three
commitments i.e., vale-neutrality, pure and applied science distinction and value-bifurcation.
Scientist considers that there is a need to preserve human genetic materials for the future study as
soon as these vanish from the earth. These are the important resources for the scientific
knowledge production.
Under the heading „the normative dynamics of value bifurcation‟ the author discusses why there
is a need for the HGDP even there was Human Genome Project (HGP). The European Economic
Community (EEC) presented a proposal for analyzing the human genetics. The EEC did not
focus on the distinction between pure and applied science. They removed ethics from the
knowledge production. The central point of this proposal was „bioethical principles‟ that will
regulate „the eventual use of genetic analysis‟. In US there was a program named ELSI (ethical,
legal and social implications) which was based on the discussion of ethics. Value-bifurcation is
applied to both ethics of science and the politics of science. There were ethical and moral issues
in the HGDP debate. HGDP tried for not gaining any benefit from the collected biological
material. Ethics is only concerned with the technoscience projects for the society at large. By
removing ethics from knowledge production and reserving it in the knowledge application
human genome project can be managed properly and the research can be done. The author raised
a question how applied ethics will criticize the bioscience and the program like HGP and HGDP?
Cheryl Noble and Sue Sherwin pointed out that applied ethics occupies the ethical rationale for
the existing practices and it‟s a description of norms applied to those practices. Many issues were
raised for the diversity project but there was no question as to why this project shall proceed. The
study on HGDP was intended for the assessment of various issues but it failed to regard the
ethical issue of whether this project should proceed or not.
The other heading „rhetoric, knowledge production, and the pure/applied science distinction‟
examines the pure and applied science in the HGP and HGDP. Improvement of medical
technology is the crucial aspect of HGP. This project became profitable for its participants
because they began to patent gene. This was the matter for the commercialization of the HGP.
Later the diversity project described as the medical project by defining its goal as the collection
and analysis of the DNA samples from the diverse population for the investigation in future and
it also leads to the identification of genetic factor of human diseases and helps to treat those
diseases. The author says that for a successful rhetoric of research justification there must be
criticizing as well as supporting arguments for initiating the research. The counterarguments and
the supporting arguments were made on the HGP, HGDP and the pure and applied science
distinction. Further, the NSF call for the diversity project tells that there is a need for scientific
knowledge production but ignored this aspect of whether there should be such a project. Ethicists
suggested that the HGP should move ahead in full speed because this project contains the
capacity to upgrade the quality of human life. The homeless people or the mentally ill will be
benefited from this project. In support of the HGDP the scientist came to know that the
indigenous people are vanishing and they are taking the information in their genes regarding the
origin, evolution and diversity of human. This project can create a connection between the
science and humanities and can be helpful for the elimination of racism. If the normative critique
affects the knowledge production and doesn‟t stop the knowledge production, the project can
work effectively in this way.
The last heading „the rhetoric of pursuit‟ offers the debates over the HGDP illustrates the three
commitments and present the ethical and political critiques of science. The goal of HGP was to
create biological tools for access to any region of human genome for the better understanding of
genetic diversity. The population geneticist decided to collect and preserve DNA samples from
the indigenous people that were disappearing. They faced the difficulty of funding for collecting
these samples. The researcher contended that the scientist take the blood for their interest not for
ours. This type of objections was against the knowledge production. Further, there was an
assertion that HGDP is not the part of HGP. These two were the different projects of different
goals. There is a need for the secure funding of HGDP apart from HGP.
The author in this chapter highlights the goals of Human Genome Diversity Project and the
problems faced by it. The idea behind scientists preserving the genes of indigenous people is to
analyze these for future study and their only aim was to increase knowledge of human genetic
diversity for future researchers. It was a matter of urgency to start this project for them as the
indigenous people are vanishing from the earth. The author very clearly presents the perspectives
of many geneticists and researchers and the information presented by him is very important in
understanding the three commitments: value-neutrality, value-bifurcation and pure and applied
science distinction. He also describes in what ways Human Genome Project is different from
Human Genome Diversity Project. The propositions made by the author regarding HGDP are
correct because they are helpful in understanding that without knowing the benefits of any
research, population respond to it unnecessarily and raise the ethical, legal and social issues
which disturb the scientist to further enhance their research. Author is correct while saying that
despite of acknowledging how this project shall precede people raised misconceptions about the
project.
Chapter 5 named as ‘Indigenist Critiques of Biocolonialism’ involved the critiques made by
people on biocolonialism. This starts from the heading „contesting the diversity project‟ in which
the author describes the controversy over the HGDP which raised the issues of power, pursuit,
and justification of western scientific research. These issues were emerged due to the failure of
contextualizing the Diversity project and its impact on the indigenous community. The
proponents were of the view that if the samples are not collected early then indigenous group
might vanish and we will lost their language and characteristics as a separate group. The
diversity project was inevitable but critics were not convinced that collecting human cell lines is
inevitable.
Under the heading „planned or under way?‟ the critiques analyzed that HGDP was just a
proposal and it was not underway. This project was not moving ahead in terms of funding as
HGP. HGDP was left in its planning stage and the scientist did not collect any samples for the
future investigation. On the other hand it was found that it was a pilot study and it required the
funding to give the best out of it. HGDP is morally beneficial it was critiqued as another
manifestation of biocolonialism.
The other heading „racism or representation?‟ clarifies that HGDP was against the racism. The
critiques argued that HGDP involves racism as it is concerned about collecting samples of
indigenous community and targeting the indigenous populations. It also includes the word
“Isolates of historic interest” which represent a particular group that should be sampled. HGDP
cannot be recognized as diversity project since it did not include isolated populations in danger
of disappearing while collecting samples. The proponents of the project were of the view that
diversity project is to provide solution to racism and this project is trying not to exploit people
but to include them. It was going to sample everyone, excluding no one. So this project was a
weapon against racism.
„Contextualizing the HGDP‟ is the next heading which deals with historical context of research.
The proponents of diversity project pointed out that the indigenous populations misunderstood
this project and their opposition is due to their antiscience attitude. There is lack of
understanding the aspiration of the projects and there is confusion over minor details. The Maori
population considered that genes are not the property of individual they are heritage of families,
communities, tribes, and entire indigenous nation. The proponents responded that no one will
force any population to participate in this project and if the population grant their informed
consent then they will not be held responsible for any impact on the particular group.
„Why patenting is not the answer‟ is last heading in which author is trying to answer that
patenting is not a good option for the diversity project. The project was not a commercial
enterprise and its goal was for knowledge production and not for gaining profit. Patenting can be
allowed on the informed consent of participating population. There were various moral and legal
issues raised for this problem. One of them was indigenous people do not want their genes to be
patented. Second issue was the proposal forces the indigenous people for intellectual property
rights, which is not a correct instrument for these people because they are recognized as a
indigenous community or a group not as an individual person and the intellectual property right
facilitate private ownership to an individual. Third issue was about in what way the rights of
these people are protected and if the samples collected are misused. The project was unclear on
these points. The fourth concern was the informed consent problem for indigenous group
because it was comprehension what might be important in future for them. Whether their consent
is secure or not? The project imposes the individual consent and these people represent
community as a whole then who will give consent for research on their behalf? The last was the
filling communication gap between the indigenous people consent and the researcher explaining
the diversity project to them. In some cases there was no informed consent for collecting samples
and the one obtained were not in the manner prescribed by proposal.
The author is discussing the concept of racism and patenting of HGDP. He is correct while
saying that the indigenous community is not at all in favor of this project. The community
opposed by saying that this project is morally wrong because it puts the indigenous peoples`
most basic property- their own genes- in the hands of anyone who wants to experiment with
them. They denied for granting their genes as this project raises inevitable questions regarding
both ownership of the genetic samples themselves and who stands to profit from the
commercialization of products derived from the samples.1 Many opposed by saying that HGDP
was not underway and it was still a proposal. It hasn‟t started working and was in its planning
stage. The author clearly states the issue of funding which was the major problem of HGDP. He
also used the concept of informed consent from individuals to group. The propositions made by
author are true and they make sense while going to the deep study of this project.

CONCLUSION-
These chapters are important for the scholars conducting their research in the field of
biotechnology and genetic science. Author very nicely describes every concept related to HGDP
and also highlights the positives and negatives of this project. He also recorded the response of
indigenous community and their views for the HGDP. He emphatically raises the concern of
racism faced by other groups of individuals and evaluates the issue of patenting genes which is
considered morally and legally wrong by the indigenous group. The author gives valuable
information regarding how the coordinators of this project ran into trouble as they attempted to
implement their project with moral tools that acted to circumvent these significant historically-
embedded debates. HGDP scientists should work effectively while recognizing ethical and legal
issues of indigenous community. They should recognize, protect and respect the rights of
indigenous people over their genetic resources. Those who wish to acquire DNA samples from
any ethnic group must start by comprehending their circumstances and culture and by respecting

1
Debra Harry, The Human Genome Diversity Project: Implications for Diversity Project, The South and Meso
American Indian Rights Center (Sep. 22, 2019, 12:20 AM),
https://saiic.nativeweb.org/ayn/files/original/0cbf9c0e9e62055028489b82ced8e624.pdf.
their idea of autonomy and their belief system. On account of most indigenous groups, this
implies tolerating that there might be a strong sense of common ownership and social identity
which doesn't enable a person to part with something, for example, DNA, regardless of whether
for money or any other reason, without group consent. Researchers need to determine such issues
with equality and respect and acknowledge answers that they may dislike.