It is now a common practice to sequence infants to test for a variety of conditions. From a moral standpoint, it seems obvious that these tests should be applied and expanded as rapidly as cost and technology permit. The main argument is, of course, utilitarian: these tests can find dangerous, even lethal conditions that might not be otherwise noticed until it is too late. Even when such conditions cannot be cured, they can often be mitigated when physicians are aware of them early enough. As such, there would seem to be no room for debate on this matter. But, of course, there is.
One concern is the limited availability of medical services. Once an infant is sequenced, parents will need experts to interpret the results. If sequencing is significantly expanded, this will involve dividing limited resources among large numbers of people, which will create the usual problems. While the obvious solution is to train more people to interpret results, this faces the usual problems of expanding the number of available medical experts. Another resource problem will arise when problems are found—parents who have the means will presumably want to address all the issues the tests expose, but it is likely that there will not be enough doctors for everyone. Also of concern is the fact that conditions that can be found by sequencing can manifest at different times: some will become problems early in life, others manifest later. This raises the problem of distributing access to the limited number of specialists so that infants with immediate needs get priority access.
One obvious reply to the concerns about access is that this is not a special problem for infant sequencing; it runs broadly across health care. And, of course, there is already a “solution”: those with money and connections get priority access to care—the same “solution” will presumably also be applied in the case of sequencing infants.
Another rather sensible reply to these concerns is that these are not problems with sequencing, but problems with the medical system in general. That is, shortages of medical experts and difficulty in accessing the system based on need. Sequencing infants will, of course, put more burden on the system and this does raise the moral question of whether the burden will be worth the return. On the face of it, of course, improving medical care for infants would seem to be worth it.
A second concern about sequencing is that, like other medical tests, it might end up doing more harm than good. On the face of it, this would seem absurd worry. After all, knowing about potential health threats ahead of time is analogous to soldiers knowing of an upcoming ambush well in advance, or a community knowing about an incoming storm long before it arrives. In all these cases, foreknowledge is good because it allows people to prepare ahead of time and thus makes it more likely that they will succeed. As such, sequencing is the right thing to do.
While this view of foreknowledge is plausible, such tests are not an unmitigated good. After all, medical tests can create anxiety and distress that create more harm than the good they do. There is also an established history of medical tests that are wasteful and, worse, those that end up causing considerable medical harm. Because of the potential for such harms, it would be unethical to simply rush to expand sequencing. Instead, the accuracy and usefulness of the tests need to be properly determined.
It might be countered, with great emotion, that if even a single child is saved by rapidly expanding sequencing, then it would be worth it. The rational reply is, of course, that it would not be worth it if expanding the sequencing too quickly ended up hurting many children. As such, the right thing to do is to address the possible risks rationally and avoid getting led astray by fear and hope.