Introduction The Human Genome Project was a research program that began in 1990 and took 13 years to complete (1). The project was originally funded by the US Department of Energy and the National Institutes of Health. Additionally, many other countries participated, including the UK, Canada, Japan, France, and Germany (1). The overall aim of the Human Genome Project was to completely understand and map out every human gene, the genome (2). The other goals of the program were to determine the sequences of the chemical base pairs that create DNA, store the new understanding in databases, improve tools for this data analysis, and address social, ethical and legal implications of the project (1). Overall, the Human Genome Project has helped many
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Among the issues that were addressed were “Privacy and fairness in the use of genetic information, including the potential for genetic discrimination in employment and insurance”, “Ethical issues surrounding the design and conduct of genetic research with people, including the process of informed consent”, and “The education of healthcare professionals, policy makers, students, and the public about genetics and the complex issues that result from genomic research” (12). One of the many issues that arose with the popularity of genetic testing and gene therapy due to the Human Genome project was based around expense. Genetic testing while becoming more accessible with programs like 23 And Me, as well as, Ancestry DNA is still quite expensive, and gene therapy can become very expensive. This has created a large gap in how accessible this possibly life saving techniques. One example is that of Angelina Jolie. Jolie is an actress with a net worth of around $200 million (13). Many women in Jolie’s family including her mother had breast cancer and many died from the disease. One genetic mutation that is well known as marker for breast cancer is BRCA1 (14). Jolie had the funds to undergo this expensive testing and discovered that she had the mutation, and was able to undergo a double mastectomy (14). Not only does this show how the fiscal price of genetic testing which is now possible thanks to the Human Genome Project, it also brings up an ethical and sociological issue; What a person does with the information given to them via genetic testing. If a person undergoes genetic testing for a disease-causing gene or genetic mutation, and it is discovered that they do have that specific genetic code like the BRCA1, people have to make the decision what to do with the information. They can take preventative measures like
Among the issues that were addressed were “Privacy and fairness in the use of genetic information, including the potential for genetic discrimination in employment and insurance”, “Ethical issues surrounding the design and conduct of genetic research with people, including the process of informed consent”, and “The education of healthcare professionals, policy makers, students, and the public about genetics and the complex issues that result from genomic research” (12). One of the many issues that arose with the popularity of genetic testing and gene therapy due to the Human Genome project was based around expense. Genetic testing while becoming more accessible with programs like 23 And Me, as well as, Ancestry DNA is still quite expensive, and gene therapy can become very expensive. This has created a large gap in how accessible this possibly life saving techniques. One example is that of Angelina Jolie. Jolie is an actress with a net worth of around $200 million (13). Many women in Jolie’s family including her mother had breast cancer and many died from the disease. One genetic mutation that is well known as marker for breast cancer is BRCA1 (14). Jolie had the funds to undergo this expensive testing and discovered that she had the mutation, and was able to undergo a double mastectomy (14). Not only does this show how the fiscal price of genetic testing which is now possible thanks to the Human Genome Project, it also brings up an ethical and sociological issue; What a person does with the information given to them via genetic testing. If a person undergoes genetic testing for a disease-causing gene or genetic mutation, and it is discovered that they do have that specific genetic code like the BRCA1, people have to make the decision what to do with the information. They can take preventative measures like