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.
This whole topic of trans-generational inheritance and non-genetic factors affecting evolutionary fitness is, in my opinion, an undervalued topic in evolutionary biology today. If treating diseased cells with a particular drug elicits the over-expression of a microRNA to protect the cell, could that sustained expression be passed onto daughter cells without genetic mutation? That would be a case of some information (microRNA expression) being passed over generations of cells that influences phenotype (response to drug treatment).
It's not strictly DNA-based, but it should still have some effect on evolutionary dynamics.
I (unsuccessfully) tried to tackle some of these ideas during my PhD, looking at other modifications to the DNA fibers like DNA methylation, transcription factor binding, and the 3D coiling of DNA inside the cell, and how that influences cell populations.
There are some interesting studies in plants from a few years ago [0-1] and more recent studies using some single-cell high throughput sequencing techniques [2] to investigate what role these non-genetic perturbations might play in evolution and disease.
You're right, it is substantially more work to clean and organize the code for publishing. Being open about your work does make the attack surface much larger and more likely to be nitpicked, criticized, have an error found, etc.
But it is more honest. Whatever you think about the effort required to do this, there's value in honesty.
Here is an example of my own scientific work:
- paper [0]
- preprint [1]
- GitHub [2]
It certainly wasn't easy to get all of this done. But doing this can also be a guide for others. They get to see exactly what you've done so that they don't waste months on the exact implementation. They can see where maybe you've made some mistakes to avoid them. They can see so much of the implicit knowledge that is left out of your paper and learn from it. Your code isn't going to be perfect, but what paper is, either?
Everyone will be a critic, anyway, so make it easy to pick up criticism of the stuff you feel the least confident in and do better next time. You won't get better if no one sees your code.
This is definitely true. Even looking at risk SNP databases for a particular disease is fraught with caveats. You really need someone with experience in the field, like a medical geneticist, to interpret the data you get. 23andMe and Ancestry can at least provide that for people, but I don't necessarily like giving up that data to a company to hold for me. But that's cool you were able to find some known markers of your personal medical history
This is written by the KiTTY developer. My guess is that when you open up a kitty session, you're not trying to open a subsequent one inside. So running `kitty` inside a session will give you a preview of the new protocol being proposed here
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.