Do you want to know your child’s medical future? Do you want to know your own medical future? Should the medical profession tell you, if they know? This is particularly pertinent when there is the ever-present possibility that you may have an incurable, debilitating disease in your future, or even an early death.
Such basic and ethical questions have long been academic for medical science because there has been no way of determining such medical futures. That is about to change. Whole-genome sequencing of newborns will identify those futures, and it raises the ethical question, do you want to know.
Science estimates that there are 7,000 rare diseases in the world at the moment, they affect around 400 million people, and most are genetic.
A large project to sequence the genomes of newborn babies is planned to start next year in the U.K., and a consultation process is already grappling with the ethical issues involved. We know from past medical developments that once the “cat is out of the bag”, the knowledge will be used, and not necessarily in a good way, or in the public interest. It is therefore essential that the ethical issues be thoroughly understood and translated into enforceable regulations before they are widely available. Mankind has a pretty miserable record in anticipating ethical abuses, so let’s hope we get it right this time. Again, do you want to know?
The possibilities of whole-genome sequencing are enormous, and many are very positive: Early identification of rare illnesses would permit early treatment; currently, many go undetected until it’s too late; demographics of particular illnesses would give the pharmaceutical industry justification for research in areas where they presently do nothing, because they see no market for their products.
There are also potential negatives, some of which are sinister. If, as a government, you know that a certain group of babies have a short life expectancy, or will have an illness that will make them dependent on the state for their entire lives, what might you do about it? If, as a parent, you know that your 3-month-old child will never be able to support themselves even if they make it into adulthood, what might you do? If, as a young adult, you are made aware for the first time that you will catch cancer before you are thirty and probably die before you are forty, how would that affect your life decisions? Would there be a significant increase in suicides? Would the state prohibit you from marrying or having a family? What if a potential employer got hold of your records? Would they use the information as part of their decision whether or not to hire you?
It sounds a bit like a science fiction/horror movie, but once the information is available, it will be used. The science is now in place, and whole-genome sequencing will soon become part of everyday health. Whether we use that knowledge for good or bad is an unanswered question, although the answer is probably “Both”.
Whole-genome sequencing is an exciting development, and one with tremendous positive potential for the future of human health, but it also has its dark side.
Let’s hope we “choose wisely”, if I may mis-steal a phrase from the old knight in Steven Spielberg’s Raiders of the Lost Ark.
