4 ms·

Ethical, societal implications of genome-wide behavioral, brain-related traits

52 points by wglb 3y ago

amadeuspagel 3y ago
Can we address the ethical and social implications of having most research behind paywalls, unaffordable to most?
- shrimp_emoji 3y ago
  Yes, it's called Sci-Hub (the thing the creator of Markdown was driven to suicide for using): https://www.palladiummag.com/2021/09/24/a-world-without-sci-hub/ https://www.palladiummag.com/2021/09/24/a-world-without-sci-...
beckingz 3y ago
It's time to walk the line between targeted curative and preventative therapies that reduce or mitigate severe suffering and the dystopian gattica world where companies can reject you based on genomics. As per usual, we'll do it in that beautifully painful messy human way.
tejtm 3y ago
didn't find a non paywall link but here is some of one of the authors other papers https://pubmed.ncbi.nlm.nih.gov/?term=%22posthuma+d%22 https://pubmed.ncbi.nlm.nih.gov/?term=%22posthuma+d%22 As someone familiar with the the mechanics I have to say I have no satisfactory answers.
- Animats 3y ago
  Is "Danielle Posthuma" a pseudonym for a large language model?
  - jlg23 3y ago
    https://en.wikipedia.org/wiki/Danielle_Posthuma https://en.wikipedia.org/wiki/Danielle_Posthuma
  - NHQ 3y ago
    Worse than that, a real Platform Muppet. The stooge name signals "researching how to control post-sapien organ-machines". The article signals conclusive evidence for applications of the research.
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. " 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. ... "
haircomiccard 3y ago
Missing an address of the methodological conceits. Well, whitewashing them altogether via statements like "Robust statistical associations". Heavy correlation can seem to suggest a causal relationship which is actually masking a complex driver which defies our (current) intuitive or even critical understanding. If you can't explain the physiological state or process which connects particular "genetic variants" with particular "brain-related traits", there might not be a connection.
- ummonk 3y ago
  Yup. A major example is that appearance related genes can be correlated with all sorts of things that actually only happen because of how other people react to the appearance.
- Slava_Propanei 3y ago
  [dead]

52 points by wglb 3y ago

amadeuspagel 3y ago

Can we address the ethical and social implications of having most research behind paywalls, unaffordable to most?

shrimp_emoji 3y ago
Yes, it's called Sci-Hub (the thing the creator of Markdown was driven to suicide for using): https://www.palladiummag.com/2021/09/24/a-world-without-sci-hub/ https://www.palladiummag.com/2021/09/24/a-world-without-sci-...

beckingz 3y ago

It's time to walk the line between targeted curative and preventative therapies that reduce or mitigate severe suffering and the dystopian gattica world where companies can reject you based on genomics. As per usual, we'll do it in that beautifully painful messy human way.

tejtm 3y ago

didn't find a non paywall link but here is some of one of the authors other papers https://pubmed.ncbi.nlm.nih.gov/?term=%22posthuma+d%22 https://pubmed.ncbi.nlm.nih.gov/?term=%22posthuma+d%22 As someone familiar with the the mechanics I have to say I have no satisfactory answers.

Animats 3y ago
Is "Danielle Posthuma" a pseudonym for a large language model?
- jlg23 3y ago
  https://en.wikipedia.org/wiki/Danielle_Posthuma https://en.wikipedia.org/wiki/Danielle_Posthuma
- NHQ 3y ago
  Worse than that, a real Platform Muppet. The stooge name signals "researching how to control post-sapien organ-machines". The article signals conclusive evidence for applications of the research.

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. " 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. ... "

haircomiccard 3y ago

Missing an address of the methodological conceits. Well, whitewashing them altogether via statements like "Robust statistical associations". Heavy correlation can seem to suggest a causal relationship which is actually masking a complex driver which defies our (current) intuitive or even critical understanding. If you can't explain the physiological state or process which connects particular "genetic variants" with particular "brain-related traits", there might not be a connection.

ummonk 3y ago
Yup. A major example is that appearance related genes can be correlated with all sorts of things that actually only happen because of how other people react to the appearance.
Slava_Propanei 3y ago
[dead]