In the science, health and environment section of thehindu.com, an article appeared under the heading “Do we understand the genome well enough to let Big Pharma jump into it?”.

I left the following brief reply.

You make important points.

Markus G. Seidel, who works at the Department of Pediatrics and Adolescent Medicine of Medical University Graz in Austria, just wrote something similar on the site of the BMJ, with regard to babies. He asks whether genome screening for newborns will pave the way to genetic discrimination. He too raises the question about interpretation (and reliability) of such data. He also discusses privacy issues.

http://blogs.bmj.com/bmj/2017/07/05/markus-g-seidel-baby-genome-screening-paving-the-way-to-genetic-discrimination/

But I wanted to write more…

With regard to the latter, I think that humanity will slowly have to accept that the digital age comes with the loss of privacy in many ways. Privacy is a changing concept and there also is a cultural angle to it, so people from different generations and from different cultures have slightly different views on what privacy is. We probably should become more relaxed about the loss of privacy as we knew it and focus more on preventing and ameliorating potential negative consequences.

In my opinion, what we need to do is ensure non-discrimination and ensure that genomic information will only be used to improve any individual’s (medical) care. In other words, genomic information must only be used to enable and allow human beings to flourish. All human beings. In a non-materialistic way.

(Note that this is not the same as eradicating everything we may not like. But we seem to have a tendency to want to do that, unfortunately, and we need to curb that urge. We need a great deal of diversity to function well as a species and as a society, for many reasons. Good and bad cannot exist without each other – as cheesy as it may sound. There simply is too much we don’t know yet, and we therefore cannot foresee all possible consequences of everything we do. Eradicating everything that seems bad to us may be bad too.)

That will require two things: good legislation and regulations and a global consensus on these issues.

Particularly the latter is a major challenge. That is why we need to discuss these topics broadly and entice people to move out of their mental comfort zone, allowing them to explore other people’s views without instantly rejecting them. Our own views aren’t the only valid or even valuable views, but they tend to feel that way to us.

Legislation, however, also has a problem as it currently tends to display a big lag relative to what’s technologically possible. It does not anticipate (much), but responds after what is happening in practice forces it to respond. Also, legal scholars still tend to contemplate situations and consequences with regard to their own jurisdictions only.

So it looks like there is a great need for discussions pervaded by a spirit of tolerance (the willingness to step out of one’s mental comfort zone and listen to people from other cultures and generations) and a forward-thinking attitude.

By “forward-thinking”, I don’t mean “blindly embracing everything science and technology have to offer” because in the past, we’ve often forgotten to ask many questions we should have asked. That, for example, appears to have happened when we embraced pesticides. They seemed such a good thing, initially, that we never considered their obvious potential for bad.

Do you agree or do you see it differently? Do you think we also need to change big pharma, and if so, in which ways, and how could we approach that?

PS
I write from my own perspective of an opinionated white woman in the west without ties to big pharma.