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In Box 3, "Guidance for best practices for researchers in the context of GWAS", the authors propose 6 actions to mitigate "misuse and misappropriation of GWAS r
by chromatin 3y ago
In Box 3, "Guidance for best practices for researchers in the context of GWAS", the authors propose 6 actions to mitigate "misuse and misappropriation of GWAS results". ("Misappropriation" is AFAICT defined as when findings are used to support opinions contrary to the academic mainstream, and I think this is implicitly supposed to mean use by racists). While item 4 does not explicitly call out an end to open science (said another way, permitting only use that is in accordance with the prevailing zeitgeist), it and the introductory text in Box 3 does hint that this is a possibility in the future.
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Ethical issues in research projects are overseen by IRBs, which mandate that a full research proposal must be submitted, evaluated and approved before the start of any project. Such a research proposal typically contains both scientific and ethical components. But these protocols rarely consider possible negative impacts on society and how these can be mitigated, and we argue that this should be added. Such a mitigation plan can include how researchers plan to translate research findings to a lay audience, how they plan to prevent or discourage commercial companies from misusing results, and how to aim to decrease the likelihood of misappropriation of results.
We propose six practical action items that can be included in such a mitigation plan:
1. Include a bioethical expert in all stages of a GWAS study: ...
2. Include relevant patient groups or social communities: ...
3. Explicitly state how the results should not be used or interpreted: ...
4. Prevent unethical usage without explicit permission: Most GWAS researchers strongly advocate the public sharing and direct download of GWAS results without going through a committee for approval. This stimulates scientific advancement and is in line with an open science policy. However, the downside of this is that uses of GWAS results are not registered and therefore possible unintended uses are not easily detected. The only way to prevent unethical use of GWAS results by other researchers or commercial parties is to only allow access after approval from the principal investigator, or a data access committee. As long as summary statistics are directly downloadable it is difficult to prevent misuse by other researchers or non-commercial parties. However, misuse by commercial companies can be discouraged by adding a so-called Attribution-NonCommercial-ShareAlike 4.0 International (CC BY-NC-SA 4.0). Such a license can be accompanied by a statement that mentions that commercial use may be possible after obtaining permission from the principal investigator. This would still allow for ethical commercial uses, such as the development of novel drugs based on GWAS results.
5. Disseminate GWAS findings to the general public: ...
6. Track online discussion of results: Keep track of where results are being discussed. ...
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- Zak 3y agoIn short, the author seems to be saying that knowledge of how humans work should be restricted because it can be used for harm. I don't think I like that take. Attempts to restrict the spread of knowledge usually don't work long-term, and often result in bad actors working in secret. Some proposals relating to AI recently have had similar traits.
- zetazzed 3y agoI don't see where this interpretation comes from. One of their 6 principles is: "5. Disseminate GWAS findings to the general public" the 4th point is the only one that concerns limiting usage, and that clearly suggests researchers may seek to to prevent commercial use of their results unless the commercial use is vetted and useful.
- deleted 3y ago[deleted]
- AmericanChopper 3y agoIt doesn’t say that the guidelines require disclosing the research, it just states a preference for it, and point 4 doesn’t say that research could not be withheld, it simply states that withholding it is the only way to prevent “unethical” use of the research. The bigger problem with this approach is that it’s simply not science. Science doesn’t involve prescribing a correct “ethical” interpretation of your research findings. Science doesn’t involve cultural and ethical overseers ensuring that your findings fit within some moral framework. What happens when the findings themselves are deemed unethical? They will be withheld from publication? They will be used to influence public policy without any opportunity for public scrutiny? They will have a correct interpretation prescribed for them that caries the weight of scientific fact? If I convinced an ethics committee that locality violations were unethical, it would not be science for me to publish research that said my findings could not possibly be used to support quantum non-locality, or that my findings don’t actually reveal locality violations for ethical reasons, and that this interpretation is the only scientifically correct one. Using ethics to define an experiment is one thing, but involving ethical considerations in the research process, and the interpretation of your findings is simply anti-scientific.