Paper review analyzes the Human Genome Project, and synthesizes some of the ethical concerns it brings about on society.

1. Nadia Blanchard
PHIL 112 DL-1 Farruggia
10/5/14
Privacy, Ownership, and the Human Genome Project
1. Introduction
The Human Genome Project, an international project with the goal of
determining the DNA sequence of the entire human race’s DNA, is
considered to be the most inspiring and disturbing technological project ever
untaken in contemporary history. This is because the findings of the project
contain information that is so sensitive and valuable, it can both greatly
improve the world and lives of countless individuals, but also potentially
threaten human rights in the process. The project, which has entailed
gathering the information of thousands of human applicants willing to
provide DNA sequences for sampling, is prospected to transform biological
research and our former understanding about the disposition towards genetic
diseases and mental disorders—ranging from Alzheimer’s to breast cancer.
This could revolutionize modern day medicine and treatment, deepen
scientist’s understanding of the human body, and decrease the quantity of
human suffering on a global scale. However, despite the great potential for
lengthening human lifespan over time, the project remains deeply ethically
controversial, as it raises several philosophical, legal, psychological,
economical, conceptual, commercial, and societal concerns. From a cyber-
ethics perspective, privacy issues have arisen from the public accessibility of
the anonymous information gathered from the project, which is updated
online every 24 hours for all of the public to see. If the database with the
names linked to genetic data were ever to be hacked, this would place people
at risk for health care repudiation and employment discrimination. In
addition, many people have raised concerns about government officials and
law enforcement authorities abusing genome research to invade privacy and

2. predict behavior of individuals. Furthermore, the U.S Government has laws
that allow for patents on individuals’ gene sequences, which can be sold to
certain companies for ownership, meaning that as human beings, we do not
claim full ownership over the genes that comprise our bodies and who we are.
In this paper, I will argue that due to the unethical conditions of the
current laws held by the U.S. government, under Utilitarian and
Consequentialist ideals, it is morally objectionable to patent an individual’s
genome. I will argue that this thesis is true, because a gene is a natural,
living thing that should not be patentable because it is not an “invention”
(Ross). I will also argue against patents due to the liabilities and risk of
discrimination and stigma that participants could potentially face due to the
lack of ownership that we as United States citizens have over our own genes,
which was taken from us without consent. I will also consider the objection
that genetic patents are necessary to facilitate research, scientific
advancement, and human health. I will argue that this is mistaken, because
the biotech companies in charge of such patents charge excessive fees for the
diagnostic testing that was meant to save lives in the first place, and because
they are using patents to prevent other researchers from utilizing specific
genes for research (Mueller).
2. Why Gene Patents Are Unethical
The position I endorse supports that patents on human genes are
morally impermissible. I have come to this conclusion for three major
reasons. First and foremost, it is controversial to patent DNA in the first
place, since it is comprised of nucleotides defined by nature. However, court
rulings have since decided that “isolated DNA” is patentable since it is “not
found in nature and is a result of human processes” (Mueller). To date, the
United States Government owns 100% ownership over everyone’s DNA and
reproductive rights, and biotech companies own nearly a third of our genes
(Adams). So even though participants in the Human Genome Project are
guaranteed medical privacy to be safeguarded through the principle of

3. informed consent, and scientists may only access genetic data without links
to personal information, some fear that “despite these safeguards there may
be inadvertent or even intentional breaches of confidentiality” (Spinello). This
is because the U.S. Patent and Trademark Office claims the power
to assign ownership of people’s DNA to private companies and universities
who apply for patents on genes. The U.S. Patent and Trademark Office began
to grant patents on human genes in the 1980s and have since granted more
than 4,000 of them, even though the majority of the public is unaware of this
fact (Mueller).
In addition, gene patents can have a detrimental impact on health care
and research. Gene patents can prevent more accurate, affordable, and
complex diagnostic tests from being developed. This is partially because “gene
patents holders often use their exclusive control to charge excessive fees for
diagnostic testing and to prevent other researchers from utilizing specific
genes for research” (Mueller).
Finally, other opponents also fear that if the wrong set of hands were
to obtain personal information, their privacy rights would be in imminent
danger, especially in our computerized society. Therefore, the issue of genetic
privacy is deeply intertwined with the concern of ownership— raising
questions such as “who, if anyone, should own the genetic information that
comprises an individual—should people’s genetic material be considered their
own personal property? Should any of the human genome be considered
public domain? And if so, should firms be able to hold patents on genetic
information?”
3. Supporting Reasons
My first contention with gene patents is the corporate access to such
patents through the U.S. government. This is because a human rights issue
is formed through the exploitation of “corporate interests that stand to
generate trillions of dollars in profits through DNA testing and treatments”
(Adams). Since these companies “own” a portion of people’s genetic code, it

4. creates an issue that could potentially turn into genetic enslavement. This is
because when someone has a child, they are technically replicating their
DNA, an act that could by definition be considered genetic piracy committed
in violation of the law. Therefore, these companies can, if they choose,
demand that royalties are paid for every child people are to create, under the
U.S. government’s laws on theft of intellectual property (Adams).
Secondly, gene patent holders are harming the potential advancement
of science that the Human Genome Project sought to achieve in the first
place, by exploiting the information obtained through the gene patents for
capital gain. For example, Myriad genetics controls all testing to determine
whether or not someone has the BRCA 1 & 2 genes, which are known to
cause breast cancer. However, in order to test for the gene, Myriad genetics
charges nearly $4,000 for the test, which most insurance policies do not cover
(Cerani). This hefty fee is too frequently enough of a deterrent for people to
opt out of testing for the gene, which in turn defeats the initial purpose of
human advancement. Similarly gene patents have a detrimental impact on
health care and research. A survey of genetics labs found that “53 percent of
labs ceased their research due to concerns about patented genes, and there
has been a significant decline in published material on patented genetic
information” (Mueller). This threatens the future of personalized medicine,
since companies will now have to ask hundreds of patent holder to scan a
single person’s genome. It may, in turn, also “drive research towards gene-to-
disease correlation away from factors that actually cause disease, such as
exposure to chemicals”. With these points in regard, gene patenting would
most likely be ruled as unethical from a Utilitarian perspective, since patents
inhibit the overall common good of the people.
Finally, there is an overall concern with privacy concerning gene
patents. If the information were to become too widely available or falls into
the wrong hands, one’s privacy rights would be extremely threatened
(Spinello). This is because if employers had access to sensitive information

5. regarding genetic predisposition for serious illnesses such as Alzheimer’s or
cancer, which could be enough of a reason for that company to not hire or
promote that person in fear of making an investment on someone who has
the potential need for medical leave later on in the future. Similarly, health
insurances could choose to repudiate individuals with supposed genetic
predispositions towards similar serious illnesses, in effort to choose the most
potentially cost-effective investments in people. Therefore, “genetic
exceptionalism”, is the theory that “genetic information is sufficiently
different from other kinds of health-related information” and “needs special
attention and protection” (Spinello). However, there are currently no federal
laws regulating the “dissemination of this information, despite the fact that
genetic testing is becoming more widespread” (Spinello). Genetic
exceptionalism supports the notion that the potential for discrimination and
stigmatization makes privacy a necessary condition of one’s security and
well-being in our modernized, computerized society. However, no current
evidence supports that such privacy rights are adequately protected,
especially since the Human Genome Project is considered that genetic data is
a national resource (Spinello). This sort of property issue has been raised over
the ownership of personal property; but until information is regarded as a
person’s personal property, it will not be considered an “asset with legal
attributes” (Spinello). Analyzing this issue from Moore’s consequentialist
perspective, the moral imperative is to “guarantee each individual’s privacy
and autonomy by keeping this information strictly confidential, and
respecting the person’s right to determine how that right will be utilized”
(Spinello). Therefore, from a consequentialist perspective, patents on the
human genome would also be considered unethical, due to implemented
government laws and the lack of federal laws that would concretely and
adequately protect individual’s rights.
4. Opposing Viewpoints

6. Proponents of gene patenting claim that patents are a reasonable
reward in favor of investor risk and work on the researcher’s part, as no
company would engage in a huge investment transaction if there would not
be an economic payoff (Cerani). In addition, many scientists in defense of the
biotech industry argue that genetic patents are responsible for scientific
breakthroughs, claiming that scientists have put money, time, specified
knowledge, and ultimately enough of an investment to warrant the cost
placed on genetic testing. Furthermore, industries claim that gene patents
are necessary to bring tests and products to the market (Mueller).
5. Response To Opposing View
While I agree that money and time should be valued as investments
towards genetic testing, we must not forget the overarching cause for genetic
testing in the first place: advancement towards human health. Biotech
companies are exploiting the cause by obtaining such patents on what is
technically a natural building block of life in the first place, especially
because testing is rarely even partially covered by insurances. The denial of
health insurances for even partial coverage exhibits a capitalist and selfish
desire on these companies’ part towards economic gain rather than
humanistic success, which was the supposed initial concern for the project.
While biotech companies are taking claim for the advancement of scientific
brekthroughs, realistically it was individual scientists and the researchers
behind the Human Genome Project that are responsible—these biotech
companies are only able to take recognition due to the patents they obtained
from he U.S. Government, which were unethically obtained from the public.
Finally, rather than inhibiting scientific innovation, genetic patents are more
known to have a detrimental impact on health care and research. Not only do
patents make affordable and more complex tests less widely available to the
public, but such patents make it so that most genetic tests are only able to
offer an “estimate of the chances for the development a particular disease and
fail to account for the influence of other genes and environmental factors that

7. cause for disease” (Mueller). Under both Utilitarian and Consequentialist
ideals, which seek to maximize the total benefit for the most amount of
people, and promoting good consequences, patent laws are not conducive to
the advancement of science’s influence on society.
6. Conclusion
Based on the above reasoning, I conclude that it is morally
objectionable to patent an individual’s genome. I have come to this conclusion
by accessing DNA patents influence on privacy implications and risk from the
lack of ownership over one’s DNA, and the limitations such patents place on
the advancement of scientific discoveries which would in turn be conducive to
the overall betterment of human health. If genetic data is considered to be
public domain, there are potential research opportunities that will be greatly
enhanced; however, this will be at the expense of privacy rights. Therefore,
there is a “compelling need” to find a middle ground between placing
proprietary ownership regimes, and patenting genetic information—one that
has yet to be discerned. However, for the pure purpose of adhering to the
initial motivation for the project—the reduction of human suffering due to
genetic diseases— I believe that patents should not be administered, and that
it should be up to the participant to determine what they do and do not want
done with their genetic information.

8. References
Adams, Mike. “US Government Claims 100% Ownership Over All Your DNA
and Reproductive Rights; Genetic Slavery is Already Here.” Natural
News: Health and Scientific Discovery. 19 May 2013. Web. 9 Oct. 2014.
Muller, James. “Why Gene Patents Are Bad For Patients and Science.”
Ethics Illustrated. 23 June 2013. Web. 9 Oct. 2014.
Ross, Valerie. “Forget Fingerprints: Law Enforcement DNA Databases Poised
To Expand.” WETA. 02 Jan 2014. Web. 9 Oct. 2014.
Spinello, Richard. “Property Rights in Genetic Information.” Ethics and
Information Technology Journal 6: 29–42, (2004). Web. 9 Oct. 2014.
Cerani, Elizabeth. “Should Firms Be Able To Own Your Genes?” CBS News.
01 Apr 2010. Web. 9 Oct. 2014.