In the article titled "Genomic knowledge sharing: A review of the ethical and legal issues" by Leslie P. Francis discusses the reality of the world we live in and how personal genetic data needs to be protected. Even the genetic data that is stripped of any previous markers of the patient can still be traced back to them or a close family member. This makes the protection of this data pertinent and Francis suggests in the article that this is even a moral obligation because, the patient isn't getting the same benefits as the researcher so their "reciprocity" per se is the safety of their genetic anonymity.
Francis also brings up an interesting point about those who do not participate in these genomic studies such as Alaska. Alaska genetic ownership goes to the the state but they have decided that a persons genetic material is "exclusive property" of the patient themselves and therefore cannot be used for research. But since the residents in Alaska are benefiting from the research that is done Francis suggests that they are essentially "free riding" since none of their patients data could be used in these genetic studies.
It seems to me the big battle with genomic studies is that people don't feel that those contributed are properly informed and I wonder if this is the first step towards a more open communication between the public and science? If not what may be the first step? and do you think that we should all participate in genomic studies to better the advancements in science and medicine?
https://www.sciencedirect.com/science/article/pii/S2212066114000283
Annelise Beer
Pot-luck, 4/11/2020
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