I recently read a nice article on Technology Review stimulating thinking on the implication of technology progress in the area of pre-natal screening based on genomics.
I stumbled upon it (it was published in December last year) when preparing for a talk I am giving today to a school class on the evolution of technology and its impact on biz. Often, the questions I get are not on the technology itself, nor on the biz but they are related to ethics and are an indicator of a latent, hidden, fear about something we really don’t know.
The technology evolution is sometimes, and for some, exciting. At other times it may be scaring, even for those who are potentially tech-wise. What I noticed, to some surprise, is that most of the fears come from youngsters whilst elderly people seem more fascinated by evolution.
However, most of the time I perceive uneasiness when confronted to technology evolution because of potential “damages” produced by technology, be it an increasing usage of energy, increasing (potential) pollution (many times I hear of people scared by electromagnetic pollution) or be its implication on how social life evolves (digital divide, increasing isolation with loss of face to face interaction…).
Although all these fears are real and need to be addressed (I am stating that the fears are real not that they are grounded on reality per se) I feel that the real challenges ahead are in our difficulty in evolving our ethical framework to cover what the evolution of technology makes possibile. And this is where the article I read is interesting. It does not provide “solutions” but it pearly points at challenging issues.
It cannot provide solutions, because we are not in a domain where the problem is how much 2+2 is, nor how to build an earthquake resistant building. We are talking about a common feeling of ourselves as a Society.
Till the 1900 there were no ethical issues about prolonging life a a person in a coma. Quite simple we had no power in that area. But as technology has progressed we can now prolong life in a coma patient almost indefinitely. And we can prolong life with organ transplant or with specific cure. All of this raises ethica issues that simply were not there before.
I was flabbergasted by discovering that over 50% of medical cost in the USA is incurred to better/prolong the life in the last six months of people’s life. 50% is a very big portion of the overall cost, and one can wonder how much health care improvement we could obtain by dedicating just half of that to take care of the other parts of life.
Often we say that we do not have the right of unplugging the life cord keeping a patient alive but do we realise that by making that choice aren’t we basically deciding to not help people in need because of the lack of money?
I am not saying this is right or wrong, I am just pointing out that there are issues that are very difficult to tackle.
What about the increasing knowledge we have on genomics? We can sequence the genome (at a lower an lower cost) of a foetus and we can spot genomic defects that lead to syndromes like Down, Edwards, … Patau. This required an invasive procedure, amniocentesis, to get a few cells from the foetus to look at (into) the chromosomes but now it is becoming possible to get the same information by looking at the foetal RNA present in the mother blood.
We can expect in the coming years to be able to much more information by a complete sequencing of the foetus genome and hence to identify many other potential anomalies. Yes, I wrote “potential” because we are far from being able to associate to several genetic diseases a certain correlation with some genomic anomalies. We know that alteration to the BRCA1 gene strongly increases the risk of breast cancer but it is not a sure thing. Similarly, the presence of an extra X chromosome in males (XXY instead of XY) -Kleinfelter syndrome- often does not result in perceivable syndrome letting the person live a “normal” life. Would a foetal detection of these anomalies lead parents to be to terminate the pregnancy. And besides: what is normal?
Parents with achondroplasia, a condition leading to dwarfism, would elect to terminate a pregnancy of a foetus that does not show the genetic modification leading to dwarfism because they would rather have a child like they are?
Knowing about the genome anomalies is for sure a benefit since it would allow doctors to take early measure to correct issues like in phenylketonuria whose bad effects can be avoided by an appropriate diet from birth and many others. On the other hand this knowledge opens the door to eugenics with dramatic ethical implication. Are children with green eyes “not normal”? Or with black hair? What about girls? In India, China and to some extent South Korea the knowledge about the sex of the foetus has increased abortion…
Again, I am in no position to take a stand in the matter, although I can tell the whites from the blacks but there are so many greys I cannot tell apart! I just notice the tremendous complexity that our increase in knowledge in the technology domain creates and the difficulty in addressing such a complexity.
I can just say, IMHO, that technologists should acknowledge this and involve people with specific understanding of non technological aspects in the application of the technology. In a way, this is what we are doing at the IEEE, Future Direction Committee when looking at Smart Cities made possible by technology evolution by involving sociologists that can help in assessing the “desirability” of technology application from a human point of view.