" 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. ... "