Who decides whether it is known that a particular individual has a specific risk factor, whether social, behavioral, or genetic, or a combination thereof? Does the individual have the exclusive right to make decisions about whether to find out about his/her risk status, or can third parties require testing or make testing a condition for receiving employment or other goods?
People may have more control over access to some sorts of personal risk information than to others. For example, the fact that an individual smokes cigarettes is difficult to hide, while whether that person has a genetic variant that affects the metabolism of that smoke may not be apparent without a specific test.
If the fact that a person has a particular risk factor is known, who should be able to obtain access to this knowledge? Options include the individual, the government, and private entities such as employers or insurers.
If the fact that a person has a particular risk is known, who gets to act upon that information? Can a third party force the individual to ameliorate the risk, perhaps by denying employment to the person or requiring him/her to use special protective equipment? Can an insurer permissibly charge higher premiums?
What are the costs of acting on the risk information, and who will bear those costs? The answers to this inquiry can be complex. For example, excluding particular individuals from certain opportunities or social goods may benefit some entities, such as employers, while arguably harming the individual as well as impinging on social norms of equality. It also is important to recognize that most costs are shared, albeit to varying degrees, and all, in the final analysis, are borne by the citizenry.
In some ways, traits such as the A1AT deficiency present a relatively simple case in the United States, because these mutations are present primarily in Caucasians and cause disorders—emphysema and liver damage—that are not particularly stigmatizing. Questions about appropriate interventions almost certainly will become more vexing as more is learned about the impact of interactions among social, behavioral, and genetic variation on behavioral itself. For example, it was recently reported that individuals with low levels of monoamine oxidase A (MAOA) who were subjected to severe child abuse are more likely to engage in a variety of antisocial behaviors (Caspi et al., 2002). These results could raise a host of questions, ranging from whether these children need special protection during childhood to whether they should be monitored for antisocial behavior more closely as adults, all of which have serious implications for civil liberties. Even assuming that the findings of Caspi et al. will be replicated in the future, any intervention would be overly broad, because the majority of