Science ethics in the genetic age

There are many discussions about research ethics and how genetic data may be relevant to problems.  A recent story with an interview of the person who unearthed it, is of the syphilis experiments done in Guatemala.  This was not all that long after WWII and the Nazi abuses, which along with  the Tuskegee study led to research protection protocols to protect subjects. All of these things were done by ordinary, otherwise respectable scientists, including medical doctors.  How, right after WWII, of all times, could they even think of doing such experiments?  The answer is that people have ways to rationalize what they do, think of themselves as basically good, and can easily objectify other people.

The debate today in regard to genetics often cites those studies, but it's fair to ask whether we're past anything like these studies, which had nothing to do with genetics anyway, or whether the possibility that such things could be repeated lurks underneath genetic data.  Is the sky falling, as Chicken Little feared, or is a new day about to dawn for human benefit?

Nobody expects any developed country to put in orders for box cars to haul off the Undesired, planning to be scientific this time, testing directly for genetic inferiority rather than, as the Nazis did, by assuming it, or by finding the helpless and experimenting on them (as in Guatemala and Tuskegee).  But many subtle forms of discrimination or abuse could occur that would not generate an Edvard Munch scream.  While many scientists are working furiously to use genetic data to develop better treatments, early disease prediction, or even direct transgenetic interventions, the possibilities that concern people are of things like using genetic data to deny insurance, employment, school admission, and so on, especially if done with data supposedly private or without some policy or consent that makes such things socially acceptable.

Much worse could happen, including direct abusive use of genetic data, in warfare or in other ways that are easy to imagine.  Whether cloning from stem cells, genetically designing children, and the like will happen nobody knows.  Whether the complexity of genetic mechanisms, which is still highly under-acknowledged, will thwart such attempts, time will tell.

Evolution has worked successfully (if not equitable or kindly!) to design us, with our strengths and weaknesses.  Genetic engineering could be less crude of a cut, or improvement--a different, kinder evolution.  It would almost inevitably have social consequences, and not all of them would be good.  But no change is all good, and society always adjusts in response, if never perfectly.

Harder to control is the impulse to study 'them', as in Guatemala and even recent HIV/AIDS testing in developing countries,where protections are less and where things can be done that can't be done here.  Anyone who thinks otherwise perfectly respectable scientists would not engage in such things (American doctors have apparently been supervising torture, just as in the bad old days), doesn't understand human beings very well--or know their history.  Who doesn't realize that genetics can be used to do ill as well as good?  How and how much such work can or should be constrained has to be thrashed out in the political arena.

The issue is where the balance among benefits, regulation, abuse, litigation, and so on lies--between laissez-fair and all's fair--and how to find that balance.  It's no surprise that people's views roughly correlate with other aspects of their social politics.

We have our own views, as most people do, but the point for public forums is to hash out the issues and try to find the most optimal path.  There needs to be resistance, but it shouldn't just be obstruction.  The problem is that unlike more rabid kinds of discrimination, that can be done on emotion alone, genetics and what we can know from it and can do, and can't know and can't do, are highly technical. That makes it harder for the public or politicians to take the best decisions.