History of NIH DNA Policies

In summary, the policies regarding DNA privacy at the NIH were influenced by several factors, including the decreasing cost of DNA testing, the government's involvement, and numerous studies on specific genes. However, it was a recent case involving the genome sequence of the HeLa cell line that sparked further consideration of privacy issues. This case and the book "The Immortal Life of Henrietta Lacks" shed light on the broader history and ethical concerns surrounding HeLa cells.
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I have one question about the history of the policies regarding DNA privacy the NIH has instituted. Simply, was there a particular study or research breakthrough that was the tipping point for instituting privacy measures?

I just read an ethics paper called "Privacy and the Human Genome Project" by Wiesenthal and Wiener, and it appears everything was coming to a head at the time the policies were created. The combination of cheaper testing, the role of the government, and the countless studies about specific genes appears to be the catalyst for the policies. But, again, if there was anyone result or group of results you know of that also spurned the change I would greatly appreciate the help.

Anyone have any leads or know anything about this?
 
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  • #2
I don't know the complete history, but I know there was a recent case involving the genome sequence of the HeLa cell line (originally isolated from a patient at a research hospital) that prompted some re-thinking about privacy issues. See http://www.nature.com/news/deal-done-over-hela-cell-line-1.13511 for this particular case. The book, The Immortal Life of Henrietta Lacks gives a broader history of HeLa cells and the ethical issues surrounding that particular cell line.
 

1. What is the history of NIH DNA policies?

The history of NIH DNA policies dates back to the establishment of the National Institutes of Health (NIH) in 1887. Initially, there were no specific policies regarding the use of DNA in research. However, with advancements in genetic research and the potential for ethical concerns, the NIH began developing policies in the 1970s.

2. What was the purpose of creating NIH DNA policies?

The purpose of creating NIH DNA policies was to ensure responsible and ethical use of DNA in research. These policies also aimed to protect the rights and privacy of individuals whose DNA may be used in research, as well as to regulate the use of government funding for DNA research.

3. When were the first NIH DNA policies implemented?

The first NIH DNA policies were implemented in 1974 with the publication of the "NIH Guidelines for Research Involving Recombinant DNA Molecules". These guidelines were developed in response to the potential risks and ethical concerns surrounding the use of recombinant DNA technology.

4. How have NIH DNA policies evolved over time?

NIH DNA policies have evolved over time to keep pace with advancements in genetic research and to address emerging ethical concerns. In 1991, the NIH published the "NIH Guidelines for Human Pluripotent Stem Cell Research" to address the use of stem cells in research. In 2018, the NIH released a new policy on genomic data sharing to promote the responsible sharing of genomic data for research purposes.

5. What impact have NIH DNA policies had on genetic research?

The implementation of NIH DNA policies has had a significant impact on genetic research. These policies have helped to ensure the responsible use of DNA in research, protect the rights and privacy of individuals, and promote ethical practices. They have also provided guidance for researchers and institutions receiving government funding for DNA research.

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