The real issue is what we mean by “all.” If all includes secondary or unexpected findings, then it cannot stop at simply giving the result. We have a responsibility to guide people on what it means, what it does not mean, and what they can do with that information. Without that, returning everything can do more harm than good.
This is why I like the term “responsible sharing.” Many of us agree on returning results, but there is still a major gap in training. If we want to return findings, then we must also commit to being properly trained to communicate them. It’s not just about access — it’s about responsibility.
To support this, we developed free modules on the GP2 platform, focused on how to return results responsibly. There are seven modules, covering topics like genomics, communication, and implications for families. @mchaparro
completely agree with “it depends”. there’s a reason why we don’t just dump test results without proper support and explanation in clinical settings, it needs to translate to research too. “primum non nocere” has to be the principle in research as well. i honestly feel terrified seing some scientific discussions on social media platforms too. while i’m definitely in support of transparency, sharing raw ideas or hypotheses without any proof can harm people.
I like the last point on scientific discussions on social media platforms. Especially when sampling rigor cannot be verified. It leads to fear and panic sometimes. Effective science communication is key for facilitating these public discussions.
In more recent times, funders require researchers to do research “with” participants and not “on” them. Of course all the individual research results are possible because of the goodwill of each participant. I believe researchers become stewards of their data. Responsible accessibility to the participants could be beneficial: it’s their data. However, there should be caution with sensitive results, with “proper support and explanation” as @ecebayram put it.
In the past I have had to revisit participants to hand over lab results as part of incentives and to advise health seeking.
