By Mary Ann Cutter, Ph.D., University of Colorado
In the last thirty years, biologists have learned an extraordinary amount about the genetic code that shapes mice and men. They have cloned mammals, transplanted genes from one organism into another, determined the sequence of the human genome, and uncovered some of the genetic footprints of afflictions like breast cancer and Alzheimer's disease. This flood of discovery tends to obscure the fact that what we know about the genome pales beside what we do not yet know.
Fortunately, there is a longstanding tradition of ways to think about the avalanche of new possibilities that genetic technologies are presenting to us.
In the Our Genes/Our Choices television programs, panelists are asked to play roles in hypothetical scenarios that draw on their own training and experience. Both as eminent professionals and as ordinary human beings, the panelists grapple with difficult decisions as the scenarios unfold and the "right" choices become anything but clear. How much do prospective parents want to know about a fetus's genetic makeup—or about their own? What happens if these private choices become public—when your employer, your future mother-in-law, or your insurance agent gets a glimpse into your genetic future? Do we risk creating a world in which the ultra-rich lease eternal youth and beauty and a genetic underclass is left behind? Is the risk worth running, given the possibility of custom-tailored drugs or therapies that make diseases like cystic fibrosis and muscular dystrophy a thing of the past? How do we balance private, public, and scientific priorities in an ethical way?
Bioethics Help Determine the Best Course of Action
This essay provides some practical tools—strategies for assessing information and value systems—that you can use to evaluate the panelists' decisions as both role-players and professionals. They can also guide you in making ethical choices in situations that may emerge in your own life. The title of this essay—"Should We?"—raises an ethical question, one concerning the best direction in which to proceed. How do we learn to think ethically?
It's helpful to start by thinking about how we understand the good and the right. Ethics, or morality, is the study of good and bad, and right and wrong, as these judgments apply to the actions and characters of individuals, families, communities, institutions, and societies. Generally speaking, we apply the terms "good" and "right" to actions and qualities that foster the interests of some or all of these parties. (An interest is a stake, participation in, or claim to something.) The terms "wrong" or "bad" apply to actions and qualities that impair those interests. Because trade-offs among moral considerations are complex and often uncertain, there is often more than one well-reasoned course of action.
Five Ways of Talking About What's Good or Right
In the history of Western ethics, there are at least five prominent ways to talk about moral interests. Called ethical appeals, these can be understood in a number of ways.
1) In terms of the results or consequences of actions
In discussing ethical behavior, individuals should be able to give well-reasoned explanations of why an agent or agents should or should not pursue a certain action. Consequences that advance interests are labeled "good" and an agent should pursue them. In the program Who Gets to Know? Dr. Rodgers plays the role of physician to 45-year-old Artie (played by moderator Arthur Miller), who is wondering whether to be screened for colon cancer, a condition that has struck down several of his family members. As Dr. Rodgers indicates, testing people for treatable conditions is generally a good idea, because it can offer them an incentive to lead more healthy lives, and in some cases, can prevent a disease from killing them. On the other hand, as clinical geneticist Dr. Fischer suggests, diagnoses when no treatment is available tend to cause hopelessness, and thus should not be pursued. Nadine Strossen, who acts as Artie's wife, worries that knowing his genetic status will only add to Artie's anxiety, and also affect family members. As Dr. Francis Collins, director of the National Human Genome Research Institute, emphasizes in the Genes on Trial program, genetic research holds great promise of new ways to understand and treat the biological basis of many diseases. Yet the knowledge it yields can be a great burden.
2) In terms of a right or rights
Not to be confused with the earlier use of "right," here a right is a claim to be treated in a certain way regardless of the consequences of doing so. A right is typically understood as a protection of an individual's self-determination or autonomy. As Artie learns after the fact, controlling access to his genetic information is not simple. Artie's belief that his genetic information is his alone is supported by states with genetic privacy laws, where he would be able to prevent unauthorized use of the information by health, disability, and long-term care insurers. In many other states, health insurers argue that they have a right to such information since it's their responsibility to calculate health risk assessments using all of the available, relevant data. As a business owner, Artie wants to reduce insurance costs by screening a prospective employee for genetic defects. (This violates EEOC regulations because the requirement is not relevant to this hypothetical employee's job performance.) In the hypothetical posed in the Genes on Trial program, in which tests reveal a genetic susceptibility to alcoholism in some members of an immigrant population from Tracy Island, attorney Pat King worries that the Tracy Islanders will be discriminated against by potential employers as "genetically defective." This would be a violation of their civil rights. The point here is that in a Western liberal culture, honoring a right is the right thing to do, whereas denying a right is typically seen as a violation of liberty or freedom in a society because it limits personal choice.
3) In terms of respect for person
To have respect for person means to value and protect the necessary conditions of personhood, which include life, bodily integrity, freedom to make choices and to act upon them, and so on. This is why genetic interventions that harm human individuals, the species, and the biosphere are considered wrong. Respect for person also means acting to promote positive conditions, for example, by developing a drug treatment for those hypothetical Tracy Islanders who might have a genetic tendency towards alcoholism. Respect for person then, involves both a negative and positive duty to others. Moral action here depends on that which is inherently special about the agent as a human being. In the Making Better Babies program, parents role-played by Lee Silver and Meredith Vieira lose their only daughter, Sophia, in a car accident but rule out the option of cloning Sophia from her remaining tissue. This decision indicates respect for person because it reflects their feeling that Sophia was unique and could not be replaced. The respect for person appeal is important in discussions of reproductive technologies, because beings that have not yet been conceived simply cannot express choice. This type of appeal gives grounds for the moral protection of others too young or too ignorant to protect themselves.
4) In terms of virtue, or moral character
A virtue is a character trait, and Western ethics has a long history of discussing which character traits are desirable, and which are not. In the West, we tend to favor someone who shows, for example, independence, ingenuity, honesty, and compassion. It's easy to approve of geneticist Dr. David Goldman's desire to consult Tracy Island community leaders before conducting a genetic study; he strikes us as a scientist who is genuinely concerned about the well-being of his research subjects. We respect the honest and caring way in which Ms. Biesecker, the genetic counselor in Making Better Babies, advises Lee and Meredith and resists imposing her own views on them. Alternatively, we tend to frown on open self-interest and greed. Journalist McFadden risks our disapproval when she considers conducting a genetic test on Supreme Court Associate Justice Stephen Breyer's napkin without his knowledge or consent; she herself observes that there's a difference between having a right to do something and doing the right thing. And we tend to condemn those who seem to have moral character weaknesses, like the young man accused of homicide in Genes on Trial, when he does not admit difficulty in controlling his actions when drinking; he has no recollection of anything that happened the night of the murder. These kinds of judgments of moral character constantly come into play in ethical discourse.
5) In terms of justice
Justice is the principle of fair allocation or distribution of resources. In the West, we tend to favor a system of justice that allocates resources so people can be individually free and yet responsible for certain societal outcomes. Safety nets like welfare programs are developed for those who need temporary assistance in order to help them to eventually become free and assume responsibility for their circumstances. Fr. FitzGerald, a priest in the Making Better Babies program, is justice-minded when he wonders what kind of a species focuses on cutting-edge research when 11,000 children die daily for a lack of clean water. Similarly, as Artie's physician in Who Gets to Know? points out, a society which makes genetic counseling available only to those who can pay out of pocket is not fair. Of course, the Tracy Island genetic study conducted in Genes on Trial also raises numerous issues of justice. Although studying a population with a limited number of founders is sensible from a scientific point of view, it raises the risk of fueling stereotypes—and thus discriminatory behavior—toward such populations. As civil rights lawyer Ms. Strossen reminds us, there is a history of looking at people's genes, as the Nazis did in World War II, to weed out whoever is deemed socially undesirable.
In short, in the process of justifying what ought to be done, ethics involves an appeal to a wide range of interests. These appeals vary, and include consequences (benefits and harms), rights, respect for person (duties to the vulnerable), virtues, and justice. The challenge in any ethical discussion is to clarify the appeals, noting how and where they are similar and different amongst those who have a stake in the debate.
Five Steps For Coming to an Ethical Decision
Given the human condition, all ethical questions are complex. They're becoming even more so as new genetic information confronts and even threatens to overwhelm us. The challenge, and the solution, lie in organizing all the information, including the moral appeals of the stakeholders, in a way that results in a clear, concise, careful argument or decision. Some believe that genetic information is different from other kinds of medical data because of its predictive power, making it psychologically and socially more stigmatizing. Further, because genetic information affects a whole family, it inevitably raises questions about confidentiality and responsibility. The steps below will help you carry out your ethical analysis.
1) Get the facts straight.
One of the challenges of contemporary genetics is dealing with the uncertainty of information. In Who Gets to Know? Artie faces a complex set of probabilities as to whether and when he will get colon cancer. In Making Better Babies Professor Silver and Ms. Vieira grapple with the personal and clinical implications of having a fetus diagnosed with Turner's syndrome, which affects people with varying degrees of severity. In Genes on Trial the panelists playing the parents of 21-year-old Joseph must consider whether he is influenced by a genetic predisposition which could increase the risk of his becoming an alcoholic. In these and other cases, it's important to distinguish between information that is unknown (such as any genetic basis for behaviors like alcoholism and impulsive disorders) and information that can only be framed in terms of probability values (which is almost always the case in genetics, though probabilities depend in part on the condition being diagnosed). Where the former is tough to deal with, especially for a patient hungry for information, the latter is equally challenging. Probability values are tricky. Saying that your probability of getting colon cancer has doubled, or increased 50 percent, is quite different from saying that instead of having a 10 percent chance of the condition occurring, you now have a 20 percent chance. Although both statements are the same, they can sound very different to different people. Complicating matters is the fact that health and disease are always the result of a complex interaction between genetics and environment. Genes alone rarely determine a clinical event, which makes it even harder to assess the likelihood and severity of one outcome over another. In contemporary genetics, assessing the facts is a real challenge.
2) Consider the stakeholders.
A stakeholder has an interest in a conflict or is a participant. Stakeholders may be individuals (like Artie, Meredith, and Joseph), families (like Artie and Nadine, Lee and Meredith, or Stanley and Karen, Joseph's parent's), communities (like the Tracy Islanders), institutions (like State University or Artie's business), and societies (like the United States). Historically, the interests of such stakeholders have fallen into certain categories of appeals: consequences (e.g., the benefits or harms of genetic testing), rights (e.g., right to genetic privacy), respect for person (e.g., respect for the vulnerable such as the very young), virtues (e.g., honesty, compassion, moral strength), and justice (e.g., fair treatment), among others. Different stakeholders can have similar appeals; for example, a patient and the members of her family may all wish to know the results of her genetic test. More often, they have different appeals, as when Artie chooses to be tested for colon cancer but his hypothetical sister, Representative Slaughter, would not.
3) Isolate the major ethical conflict.
Once the stakeholders are clear, isolate the major ethical conflict the problem presents. You won't be able to resolve all the conflicts, so choose the one that is particularly troublesome in order to move the debate along. In Who Gets to Know? there's a conflict between Artie's desire to know his genetic status and his sister's reluctance because of the possibility of insurance discrimination. In Making Better Babies there's a conflict between the parental right to reproductive choice and the rights of those born with genetic defects to be equally valued by society. In Genes on Trial there's a conflict between the researcher's interest in pursuing genetic knowledge and the Tracy Islander population's interest in avoiding harmful stereotypes and discrimination. And these are only a few of the disagreements presented in the programs over how genetic information is understood and how it will be used.
4) Consider the likely options.
It's easiest to justify the likely position of each major stakeholder on each side of the argument. Note, for example, how you can justify both Artie's desire to know and his sister's preference not to. Next, take a look at compromises between and among stakeholders. This is more complex, because you have to look at points of agreement, or minimal tension, between so-called opposing parties. As an example, Artie's request that Dr. Rodgers destroy his genetic test results to eliminate a paper trail might resolve his sister's concern that an insurer could use the information to discriminate against her and her family.
5) Be prepared to take an ethical position.
A Pregnant Woman's Real-life Dilemma
At this point, ask what should or ought to be done. Spend time developing your position by clearly and carefully stating the major reasons for it. This step is the heart of ethical discussion. No ethical argument is perfect, but some can be stated more clearly and are based on more rigorous thinking. Think outside the box.
Let's consider the ethical dilemma in Making Better Babies that Kathleen McAuliffe actually faced at the age of thirty-eight in terms of these five steps:
1) A 38-year-old medical writer, Kathleen, and her husband are very excited about having their first child. Because of her age, she is encouraged to consider genetic testing and ultimately consents. When the test results are back, she learns that she has a 10-12 percent probability of producing a child with symptoms that include profound deformities and retardation. Although Ms. McAuliffe is devastated, her husband remains more optimistic.
2) There are three major stakeholders: Ms. McAuliffe, her husband, and the genetic counselor. (Here, ethicists Asch and Charo might interject that society is also a stakeholder, while Father FitzGerald and Reverend Anderson could urge that religion be taken into consideration in any decisions about life and death.) Ms. McAuliffe is willing to abort in order to avoid bringing a seriously handicapped child into the world and having to devote her life to the intensive care it would require. Her husband is more comfortable with the probability that their child would be healthy, but comes to believe that the decision of whether to proceed with the pregnancy is ultimately his wife's. The genetic counselor has the job of providing information in the most non-directive way possible, dealing with what Ms. McAuliffe refers to as "the really fuzzy odds that [the patient] might not have a clue what to make of." (Here, depending on who the other stakeholders are perceived to be, there may be social concerns about discriminating against the disabled, or religious concerns about violating respect for person.)
3) The major ethical conflict is whether or not to terminate the pregnancy.
4) Options include aborting the child (which would be legal and medically justifiable) or carrying the pregnancy to term (because the risk factors may be considered low, because of concerns about discriminating against the unwanted, or because of religious prohibitions). A future option may be to genetically engineer the fetus to eliminate the genetic flaw.
5) You're now ready to develop your own ethical position. Do you think that Ms. McAuliffe should abort the baby or carry it to term? What is the reasoning behind your position?
In short, thinking ethically in a situation means organizing the facts, values, conflicts, and options for resolution in order to determine the best course of action. Once you have worked through the steps outlined above, you're ready to take a position that is informed by the situation in all its nuanced complexity. In this way, information becomes power. As Dr. Collins and Justice Breyer remind us, whether on a personal or professional level, we face this burden and responsibility in our decision-making process. An alternative is to remain uninformed. But as Prof. Charo observes, the resulting luxury of ignorance is one that few can afford, especially in an era when genetic information is transforming our understanding of how life works.