PUTTING THE ETHICS BEFORE THE EVENT
Thinking through the ethics of an event prior to executing that event is wisdom. Once the event occurs, any ethical violations will have already occurred. This principle is increasingly applicable given our exponentially increasing advances in science and technology. One of the best unfolding examples of this is genome sequencing and how that knowledge translates into specific genetic and health information for individuals.
Genome sequencing and its application allows scientists to identify the propensity (or destiny!) of an individual to acquire certain diseases or other health disorders at some point in his or her life. This brief definition is of course a greatly simplified one as there are so many more complicated technical aspects to the science. However, the fact that we now have these capabilities and the fact that these capabilities are constantly expanding is very important for two reasons:
First, as with most developing technologies, the time and the cost tend to decrease. Whereas genome sequencing 15 years ago would take years at a cost of tens of millions of dollars, currently it can be done in days at a cost of approximately $5,000. Projections are that the time and cost factors will only continue to improve. This means that more people will begin using the services for themselves and for their children.
Second, the technology confronts us with a myriad of ethical questions:
- Should every baby have its genome sequenced?
- Are parents obligated to provide for this service?
- How will the results be kept confidential?
- Will the results ever result in discrimination?
- What filter will clinics use to decide what results will be reported?
- Will individuals have the freedom to decline certain segments of the results?
- Will individuals have the right to know everything?
- How will insurance companies and employers use this information?
As with so many ethical questions, the list will likely only grow longer and more complicated. That is why I am thrilled to see that some groups within our medical community are at least taking the first steps in trying to put the ethics before the event. Alan Bavley describes one of the most exciting research projects that will search for answers to these questions (“The Uncertain Climb to Genetic Answers” The Kansas City Star , May 24, 2015, pp. A1, A10):
“ Children’s Mercy [Hospital in Kansas City] is one of four medical centers across the country that are part of a five-year, $25 million NIH research project to study how genomic sequencing might best be used among newborn children.
The centers will be seeking parents to volunteer to have their babies’ genomes sequenced, comparing the results to those of conventional blood tests, following how the sequencing affects the children’s medical care and surveying parents on the effect genomic sequencing has on relationships with children and spouses.
The project is an attempt to gain a scientific understanding of the issues before falling prices make genome sequencing of newborns a fait accompli. ” (p. A10)
I believe the results of this project will provide crucial help in further assessing how our ethics will apply to this new technology. The project does not come a moment too soon. Tackling these issues now will ensure a deeper and more thoughtful application of the technology tomorrow.
Everyone benefits when we can position our ethics before our events. After all, we must not simply be efficient and effective; we must exercise wisdom.
