The Human Genome Project has profound effects upon humanity. Because the impacts of having access to the sequenced human genome can have very important applications in the identification and treatment of genetic diseases, the accessibility of such information is of critical importance. Sine the Private Corporation, Celera began to sequence the human genome in September of 1999, there has been a great deal of debate as to wether the information uncovered by the human Genome Project should be publicly or privately accessible.
John Sulston, a British Biologist who worked on the public Human Genome Project perceives the Private Human Genome Project to be “a complete waste of resources” (1) . In 1998, the private corporation, Celera announced its plans to map the entire genome at a time when the public Human Genome project was attempting to secure more funding. With this additional funding, the public sector of the Human Genome Project hoped to map one third of the Human Genome by 2003. While the publicly-funded Human Genome project did reach this goal, and did so under budget, the inclusion of the private sector in the Human Genome Project greatly took away from the resources available throughout this endeavor and utilized methods believed to be less accurate, albeit faster than those employed by the public sector.
From an ethical standpoint, the Public sector of research appears to minimize many of the ethical concerns raised by the Human Genome Project. Making the human genome availably privately means that individuals will need to pay to access this information and that this information cannot be redistributed to others. This means that all humans will not have equal access and therefore equal benefit form this project. Few developing countries would be able to afford access to the human genome, despite the common heritage they share with other, wealthier nations. This means that these areas would be limited in the fields of gene therapy and that many diseases that could potentially be treated as a result of the Human Genome Project would be able to continue in these populations.
Having information regarding the Human Genome available publicly has the potential to lead to genetic discrimination and the production of “super humans” free of genetic disease or abnormality and ”designer children” who have desirable genes selected for them such as intelligence or resistance to disease. Regulations exist to ensure that genetic information is used in ethical ways and is not used in discrimination and must be continually revised to incorporate new research on this topic.
Having the Human Genome available publically allows for scientific research and collaboration to further the developments made as a result of this project. The Human Genome consists of 3,000 million base pairs all of which need to be investigated in greater depth, so research in this field is a necessity. This is however not possible of the Human Genome is locked away in the private sector.
The primary goal of the Social Work Field is to help meet the basic human needs of all people while enhancing human well-being(2) . Human needs and conditions are all interrelated. In order for a social worker to be successful in his or her work, they must be aware of the environment, history, biology and physical and mental health of clients. Therefore, making genetic information available publicly can be beneficial to both social workers and clients. Social Workers may also encounter individuals suffering from genetic conditions in their line of work. For example, a social worker is likely one of the first individuals a patient would speak with upon being informed that they have a genetic disorder. Therefore, they must be trained to respond appropriately in situations such as these and to advocate for their clients in an effective manner. Additionally, Social Workers stress self-determinism and informed consent in their practice. An individual must be aware of the risks and benefits of genetic testing as well as his or her right to refuse genetic testing. If this information as available publicly, there would be a great deal more transparency in the field of genetics and patient’s rights would be stressed.
Making the Human Genome available publicly is beneficial to humanity in many ways. By creating an open and collaborative environment for providing genetic care, as opposed to focusing on profit and competition at the cost of patient care, clients will benefit from the information obtained from the Human Genome project and related studies. To make this information private would severely limit the accessibility of this information as well as its potential to benefit humanity.
|↑1||Sulston, John. 2005. John Sulston on Human Genome Project: Public vs. Private Competition. Oral History Collection. Cold Spring Harbor Laboratory.|
|↑2||National Association of Social Workers. 1996. Code of ethics of the National Association of Social Workers. Washington, DC: National Association of Social Workers.|