Daniels' "Positive and Negative Genetic Interventions"

Daniels, Norman (2000). “Positive and Negative Genetic Interventions" in Buchanan, Allen et al. eds, From Chance to Choice. Cambridge: Cambridge University Press, 104-155.

Chapter 4 is primarily authored by Daniels but the preface also states that Allen Buchanan, Dan Brock, and Daniel Wilker should be credited as well. The chapter starts off with a brief history of eugenics including the distinction between positive and negative eugenics. The point is to show that there may be a moral distinction between practices that seek to achieve the same goal. The idea of normalcy is brought up to note that an idealized or perfectionist view of superior or normal traits may mean that we know to be normal today may be defective in the future. He concludes this section by pointing out that we are appalled by the bad science of the past. He is implicitly cautioning against science functioning out of control in the future.

The next section starts with a presumption that negative genetic interventions (abortion, screening, somatic/germline cell replacement) are mostly viewed as being permissible while positive genetic intervention (enhancement) is at least problematic and possibly morally impermissible. It is important to note that this chapter tends to focus on public policy as it relates to medical intervention by the state or insurance so it is unlike the focus Harris has on the individual. In fact, he does not even mention whether an individual has a right or the freedom to enhance certain traits. He does delve into social justice issues, which may actually indirectly state his position. He does make a distinction between the eugenics movement of the past and current interest in somatic or germline therapy by noting that we are less concerned about population gene pools and more about individual health. He also notes that the disability movement has increased awareness and led to more acceptance of diversity than in the past. Lastly, whereas negative eugenics was not generally viewed as a moral distinction, it very much is so today, especially when so many are sensitive and frightened that history may repeat itself.

The “brute luck view” or natural lottery that Scanlon coined drives the quest for the right moral approach to the notion of equal opportunity and its implications to health care. The treatment/enhancement distinction is closely related to the idea of medical necessity or a medical boundary line. From a public policy or insurance perspective, it has more to do with etiology than suffering because there are many cases of suffering (mostly psychological) that may not affect equal opportunity. Impairment seems to work better from the insurance view than unhappiness, preferences, or possibly even bad coping behavior. The treatment/enhancement line comes from the idea that it has a disease component that we are not responsible for and an objectively specifiable burden of harm. It must be typical of the human condition and not because someone has a bad attitude. This is problematic in certain cases that have different causal explanations but similar effects on impairment. He asks whether the Aristotelian idea of justice demands that we treat cases like this similarly. This too is problematic as he shows between the case of being dull and having a learning disability. We treat one and not the other (in a narrow sense) even though the starting position may have been the same. This raises the difficulty of making the treatment/enhancement line more arbitrary and of less value. There is also the possibility that the line may be value laden by social constructs, which therefore creates problems with postulating a moral boundary.

The treatment/enhancement line is not the same as the obligatory/nonobligatory line because resources may not be able to meet the needs of all impairments. It is also not the same because society recognizes that we may have certain moral and legal obligations to offer medical services without impairment. Daniels/Buchanan et al. claim that their primary justification for considering a health care service as obligatory by society is for the reasonable effective treatment of disease and impairment. They claim that the line between this and normal functioning is relatively objective and nonevaluative provided by biomedical science. I argue that objectivity is problematic because biomedical understanding/technology changes everyday along with societal values that struggle to keep up. They also claim that the normal functioning line also allows people to remain competitive in all aspects of social life, a point that they will relate to justice. This lead to an equality of opportunity that they argue is an obligation of society to protect. Some diseases/impairments will be more important than others to maintain this “normal range of opportunities”. It is here that they start to appeal to Rawls. They identify two other “pulls” as it relates to egalitarian concerns: to equalize of at least reduce the disadvantages that result from less than equal opportunities regardless of impairment/disease; and to remove the source of unhappiness from which we suffer through no fault of our own.

Daniels view of the normal functioning model rests on Rawlsian view of equality of opportunity. As it relates to health care, it keeps people as close as possible to normal function as possible as a way to create a just, egalitarian society. Liberty must come into the picture but may conflict with resources and efficiency of distributing health care. The equal capabilities model formulated by Sen argues that the object of our egalitarian concerns is equality in what can do or be. We achieve equality of opportunity when our capability sets are equal. Daniels thinks this might be problematic because a theory of justice requires integrating concerns for equality with that of liberty and efficiency, which the equality of opportunity model allows while maintaining equality of capabilities. Incommensurability is mentioned as a problem as well because different people may rank different sets based on different conceptions of a good life. Due to this, no baseline can be established, which may actually push for a more expansive model of medical intervention.

The equal opportunity welfare model says that we have a claim to others assistance whenever we are worse off than they are through no fault or choice of our own. Only if the same expected payoff in preference satisfaction can be achieved, can this model be obtained. Normal capacity for revising our goals, values, and preferences is more of an issue than explicit choice. They then continue to argue that the normal function model makes for better public policy. Further, they claim that support may wane for mental health interventions if reasonable efforts are not made to modify someone’s attitudes or behaviors through environmental means. The same goes for physical genetic enhancement as it relates to genetic enhancement. I do not see how public opinion or support should effect the question of justice and morality, especially as it relates to matters of freedom and health care. In addition, wouldn’t resources be different for enhancement technology than other types of technology? Even if the resources were the same, we would recognize utility of resources for need first, want second. The case that comes to mind is breast enhancement for a mastectomy victim versus the stripper. I think justice would dictate that the mastectomy victim has preference but if the resource was available, why shouldn’t the stripper be allowed to purchase the enhancement. Lack of resources creates a moral boundary on who gets the resource, not a boundary line on the procedure itself.

They conclude by claiming that the point behind appealing to a natural baseline is that it provides a good basis for public action, despite disagreements of value. They claim the natural baseline has not metaphysical importance but is a focal point of convergence to what we owe each other by way of medical assistance or health care. The treatment/enhancement line is useful but they do not expect a lot from it. Doesn’t that imply that maybe it is not the best line to use? They do note that it does not necessarily match up with the permissible/impermissible line. Many enhancements, they claim, would cause serious problems plus there may be other concerns so a moral flag should always be raised concerning questions of enhancement. Public goods and other coordination problems arise when all parents pursue a course intended to be best for the offspring. What parent doesn’t that is within the set of “good” parents? They also believe that enhancement would give a positional advantage and that the values of the child may be in conflict with the values of the offspring.