jrhawley

Author here, thanks for your thoughts.

I agree with you, just the existence of Mastodon/Discourse/others isn't sufficient. The onboarding and home/local/federated timelines of Mastodon can be a bit confusing at first, which does take some time to get used to. Just not being the other guys is the first of many necessary steps to being better.

And yes, scientists can't be entirely insulated from the wider public. Ideas that only stay in academia don't make the same impact that they need to in the wider world. Similarly, academics need to hear from the wider world to learn what problems are important and how their work can impact people. There need to be forums for interacting with large public audiences.

It seems like many commenters here are not practicing scientists and may misunderstand the role that ethics frameworks, such as these, play in the process of scientific publication.

When conducting scientific experiments, a lot of care is taken to design them well before performing them. We do this to prevent basic mistakes, avoid pitfalls that previous researchers fell into, and be careful that readers of our work don't misconstrue or misinterpret results that we find.

If you develop a new drug to treat newly developed breast cancer and find out later that one of your recruited subjects has breast cancer that had metastasized from elsewhere (and is thus not new), should that patient be included or excluded from your study? This is a basic mistake that should have been avoided, but what's done is done and you need to decide what to do next with this individual.

Is it ethical to have that individual participate in the this research study? Their cancer history is not relevant for the study you're conducting, but are you depriving them of an opportunity to benefit from this new treatment if you exclude them? Are you depriving them of accessing more medically relevant treatments from other studies? What about the person with breast cancer who would have been included in this study if this person wasn't mistakenly selected? Are they not deprived of the opportunity to potentially benefit from this treatment if the first subject is not excluded?

Many ethics frameworks focus on those who _are_ involved in the study. These include things like:

- how was informed consent about risks and potential rewards obtained?

- how easy is it for the subject to withdraw from the study?

- what degree of discomfort or surgery will they be subjected to?

- should the study be restricted only to patients with terminal diseases, or others as well?

The guidelines from the linked article, however, focus on the ethics of individuals who _are not_ involved in research studies.

> However, these frameworks apply to research involving the participation of humans and do not generally consider the potential benefits and harms of research about humans who do not participate directly in the research. > Such research is typically exempt from ethics review.

If you're studying heart attacks but only recruit men in their 60s for your study, then you are not obtaining information about women of the same age bracket, even though they are also affected by this medical condition. If no research on heart attacks for women in their 60s is ever conducted, whatever treatments that are later produced to prevent or treat heart attacks that build on this research effectively exclude women, even if that was not the original intent of the study. The women not included in these studies also have dignity that requires ethical consideration when designing these scientific experiments.

These new guidelines add notes on considering sex and gender. These are obviously important considerations in journals like Nature Human Behaviour, where gender expression in societies, across cultures, and across times will be heavily studied.

These new guidelines also add notes on race and genetic ancestry. These are important for studying disease genetics, for example, where mutations in tumours from individuals of European ancestry look different from individuals of African or East Asian ancestry. These differences may result from environmental exposures where these people live (e.g. access to healthcare in poor or rich regions), societal events that affected some groups but not all (e.g. genocide, nuclear fallout), or differences originating long ago from their genetic ancestors of a specific ancestral region.

Not recruiting certain groups of people in these studies prevents future research from being funded that would be applicable to those same people. It also prevents confounding variables when comparing across populations. You can imagine that if only one type of data is available for a certain demographic compared to newer and more advanced data from another, that comparisons between those groups will be confounded and not fair to either group.

There are a lot of annoying checklist requirements that one has to go through for submitting a scientific article, but these are not them. There are good reasons to include these guidelines in scientific journals.