Tensions between Autonomy and Justice

Ann Boyd

Recently, a couple in Great Britain with a three year-old child suffering from Beta-thalassemia major approached an in vitro fertilization (IVF) specialist in order to select an embryo which would be a tissue match for their sick child. The parents hope that IVF will result in a pregnancy and that the cord blood from the tissue matched future child will be used to successfully treat the sick child’s condition. The treatment for thalassemia major is nightly administration of drugs through a tube in the child’s stomach followed by blood transfusions once a month. Without a cord blood or bone marrow graft, the future prognosis is poor. The oversight agency, Human Fertility and Embryology Authority (HFEA), allows the legal selection of embryos using IVF for such circumstances. The HFEA advises physicians to consider the welfare of any child born from such selective IVF treatment and any other person likely to be affected by the birth. How should the ethical use of IVF and selection in a case such as this be processed? Who is likely to be affected by the decision? Whose autonomy is relevant? Why does this case pose a tension between autonomy and justice? What are the ethical issues in the case?

When modern technology allows the possibility of IVF and selecting fertilized embryos on the basis of a predetermined tissue match, is the benefit of the treatment justification to support the choice? If we agree that the couple has the right and freedom to have additional children and the resources to raise and nurture more children appropriately, is there any reason to deny them the choice? The physiological risks to the future child are not compelling if we imagine that the cord blood will successfully treat the child with thalassemia. However, if the cord blood transplant is unsuccessful, might the family request bone marrow donation from the future child and if so, would the future child be able to refuse? What psychological harms are of concern? Is the future child likely to perceive of his/her life as existing solely for the purpose of benefiting the ill sibling? What impact would the unsuccessful treatment have on the family, including the parents and the future child? What alternatives might the couple have? There are many reasons for having a child and it is difficult to know what actual motives or outcomes will occur in such a complicated case.

Autonomy is the ethical principle that supports individual choice as a voluntary and informed decision. In this case it is the parents who have to choose what is the right action to take and who know their circumstances and intentions. The doctors face the autonomous choice of whether to help or not. As a philosophical concept, autonomy reflects the ability a human person has to set goals, reason through complicated situations, and choose an action consistent with their values according to free will. In some circumstances, it is difficult for a doctor to discern what is in the heart and mind of patients (in this case the parents). The doctors have knowledge about the selection process, potential benefits and harms of IVF and selective procedures related to determining the matching embryo, and can best inform the parents of the range of choices with attending risks and benefits. Seeking the advise of healthcare professionals with the expressed intention to find a way to treat the sick child, to relieve suffering, seems morally worthy. Most parents would not have the equivalent skill and education of the physicians and rely on the doctor to truthfully inform them about all possible options. It is the IVF doctor who has the “objective” knowledge of the technology, but at the same time the doctor is also heavily vested in the technology and may be overly optimistic about a successful outcome. Medical choices affect patients differently than the doctor because it is the patient’s family as individual lives that are at stake. Respecting autonomy restores a sense of balance between the doctor and patient when both parties realize their respective duties and responsibilities in the deliberation about healthcare choices.

Philosophical Grounding of Autonomy

Kant’s theory of Respect for Persons conceives of autonomy as freedom of the will relying on reason without external coercion or control (Kant, 1785). Imperatives are “ought” statements that express what would be a good thing to do. All imperatives command either hypothetically or categorically. Hypothetical command reveals the practical necessity of doing one thing in order to produce something else. A Categorical imperative represents an action as objectively necessary in itself, without reference to another purpose or end, and thus is a law of morality. The categorical imperative recognizes the universal ability of persons to reason and determine what is morally good. The moral law is a product of reason and therefore practical. The one categorical imperative is: “Act only according to that maxim whereby you can at the same time will that it should become universal law” (Kant, 1785, 30). The maxim is the subjective principle of acting created through reason. The universal formula recognizes duties to self and others, while a rational nature is the defining norm of the human person. All moral agents must be competent rational creatures. Recognizing the commonality of reason among all persons, and the duty to respect the dignity of each person, Kant worded the categorical imperative in a practical way to emphasize humanity: “Act in such a way that you always treat humanity whether in your own person or in the person of any other, never simply as a means, but always at the same time as an end” (Kant, 1785, 36). In the “means-end” statement we are asked to consider another person as intrinsically valuable and not as a mere means to our desired purposes. The other is allowed the freedom to act according to what is reasonably determined to be good. Kant promotes the development and exercise of rational, free, informed choice (Gauthier, 1993).

The doctor patient relationship may share a common intent such as the health of the child with thalassemia and the well being of the future child. An open and honest conversation between the parents and the physicians is imperative if the doctor is to have autonomy of the will and maintain respect for the parent’s choice. In order to choose, the parents need to be given the positive and negative effects of all treatment options. Truth telling, confidentiality, and the process of obtaining informed consent are all intrinsic to the relationship.

Autonomy comes into tension with justice in the revelation of a range of possible options. In earlier times, choices were more limited than they are in the present practice of medicine. As more treatment options evolve so does the range of choices and often the complexity of treatment choices increases as well. Autonomy in the context of expanding technical possibilities leads to a concern that a patient may demand expensive and heroic technology, forcing the doctor to act even when the proposed option provides only minimal or marginally effective results (Tomlinson and Brody, 1990, 1280; Davis and Churchill, 1991, 31).

As freedom for self-determination, autonomy is not necessarily the right to demand a specific medical option. Fair distribution of goods may limit choices without intending harm or interference with a patient’s own good. Every possible technology cannot be given to every person and autonomy does not require unlimited care, rather it allows choices within a set limit of options. A doctor who proposes a futile treatment sends a mixed message. Assumed to be acting in the patient’s best interest, treatment offered implies a benefit, but if medical facts indicate that the treatment has little or no benefit, it is technically not a treatment. Deciding what the range of possibilities is challenges health care professionals. In this case, should infertility be considered a disease? Might the couple conceive naturally and by prenatal testing “select” a matching fetus? What is the probability of natural selection? What if none of the IVF embryos match? Autonomy does not mean a right to receive specifically requested medical treatment if such techniques are medically considered to be of marginal value. Autonomy allows choices among reasonable alternatives. Therefore social justice is not necessarily in conflict with autonomy.

Moral Responsibility

If autonomy is understood as an over emphasis on individualism as neglecting the common good, it is misunderstood in its philosophical grounding. Joel Feinberg (1990, 110-111) argues that it is not necessary to allow individual liberty to trump community but autonomy can coexist with mutual tolerance, respect, charity, and cooperation. Understanding autonomy as moral responsibility bridges the gap (Gauthier, 2000, 337). Autonomy based in Kant’s stress on the rational nature of persons deserving dignity and respect, does not exclude the emotional and communal elements influencing the values of a person. Kant did not deny the influence of our social environment, families, values, histories, and traditions. As rational creatures, human beings are responsible for the choices we make. Certainly moral responsibility can and should include consideration of mutually shared goals and values. In evaluating how an action will affect not only self but also the community, Kant acknowledges that moral considerations should include endangerment to public health and potential harm to innocents. Respect for autonomy is an essential component in any pluralistic society (Gauthier, 2000).

Moral responsibility refers to the accountability of the agents’ voluntary choice and to a judgment about the rational justification of the agents’ choice. In both ways the agent albeit free to choose according to reason, is nevertheless responsible for the weight of considerations given to the effect of a proposed action on relationships with other persons. The intention of the agents’ action is subject to reflective judgment. A person who accepts responsibility for acting as a moral agent is subject to the critique of the community. Thereby moral responsibility becomes a virtue because it admits accountability for choices made in relationship to others and admits duties to self and others. The willingness to take responsibility for our own character as persons – to know who we are – and to care about how our choices affect others is moral responsibility (Gauthier, 2000).

We are not mere products of our birth lottery and genetic blueprint, but we are persons with the rational capacity to know right from wrong. We can see the effects of our choices on our family and community. If we are willing to accept responsibility for our actions we can examine the effects of an action and reflect on the intention and through a rational process mature morally. Individuals can examine the reasoned choice in light of harm, injury, and damage to relationships that allows amendment of life. Such a deliberate will and sensitivity to other persons provide the experiences, which reveal what it means to be a morally responsible person. Thus moral responsibility allows a person to exercise self-determination and be responsive to community. We do not treat a person as a mere means when a treatment option is denied because the choice cannot be freely available for everyone. We do not treat someone as a means by limiting choices on the basis of common good, nor do we treat them as an end by merely satisfying their requests. The impartial observer perspective is vital to rational assessment of the means-end imperative.

Autonomy does not exclude responsibility and duties to others when it is understood as moral responsibility. Simultaneously, individuals must be free to rationally decide/choose if the agent is to be held responsible for the choices made. Persons who oppose having a child as a tissue donor must show not only that the child to be is being used as a mere means but that impartial rational persons would agree that no child should be brought into the world for such reasons (Green, 2001, 256). As a moral agent, I must consider more than my immediate benefit. Willing to reason impartially, I must recognize in a purposed action any potential harm to other persons. Kant’s practical reason recognizes the complex human realities as the context in which a moral agent makes a morally responsible choice. He challenges us to see an ethical issue from the informed advantage point of every moral agent.

Justice

John Rawls’ conception of justice recognizes the unfair distribution of talents and abilities in the natural lottery and the need for compensating adjustments (Rawls, 1971). Developing a fair system of justice requires an objective vision of the whole complexity of the human condition. Rawls suggested we should imagine a hypothetical position in society where we do not know our own genetic make-up, social background, race, gender, talents, or abilities. Behind this so-called “veil of ignorance” we are empty of experience, personal agenda, and free to be as objective as possible in thinking about a system of justice. Rawls predicts that under these circumstances a person will construct a system that guarantees basic liberties for all and that any socioeconomic inequality tolerated would benefit the least advantaged members of society. His “difference principle” thus sought to elevate the worst off members of the social group. Critics assert that very few of us can take up the “original position” because we are already products of a system of values and norms. If we are to develop a more socially just society, it must also be one in which we desire to live. Rawls argues that everyone can make a commitment to the fair treatment of all persons with a special protection for the least advantaged. Who is the least advantaged in this case – the parents, the thalassemic child, or the child-to-be? Perhaps it is a family with similar need but without access to such sophisticated technology.

How should medical care be distributed – according to need, desert, or through free exchange? The three need not be separate but may complement one another. The medical profession claims the priority of need: treat a patient because of illness with the hopeful intention to make the patient better. However, defining what is a need can be difficult in the context of modern medicine. The need criterion is defined variably in different contexts and a more consistent definition is needed. Need cannot be “anything that can be done ought to be done.” Medical needs must stay within a more narrow definition, as medical needs arising from biological or psychiatric illness. All biological traits may not qualify as medical need. To qualify as a medical treatment the treatment should have the scientific value of being safe and effective, not simply anything that might make a person feel better (Walzer, 1983).

Medicine has a history grounded in the Hippocratic tradition, often equated with clinical practice being the art of treating individual people one by one. The individual medical need of each patient becomes the driving force of the physician’s duty to help, heal, cure, or merely comfort the patient, protecting him or her from harm and injustice. The particular nature of medical practice makes it very difficult to capture the larger social picture. This history is very important when we face questions of justice in contemporary medicine and philosophy.

The sick person is vulnerable by virtue of being sick and the physician has the ability and skill to help, therefore the physician, not the patient has access to resources upon which and whom the patient is dependent. The relationship is unequal at the start. The medical tradition over many years consistently has taught the duty and responsibility of the physician is to act in a just and humane manner to those who are vulnerable. In practice this means treating his or her patient fairly, in trust, confidence, and according to his best interest. Thus justice in this context is individually adjusted according to each patient’s need.

The relationship between doctor and patient is then asymmetrical with power on the side of the physician. The justice imperative herein is to avoid taking advantage of the patient and to take care not to harm a patient. To gain an appreciation of the values and needs of the patient requires attentive listening to and cautious interpretation of what is heard. Justice then is extracted from the patient-physician encounter collectively reflected on in terms of community groups and shaped into policies that treat similar patients fairly (Zaner, 1996).

Application of the principles of justice and autonomy in the context of the opening case depends on the acceptance of normative values in each principle. If autonomy is the free moral responsibility of doctor and patient, and if justice begins in the context of the doctor-patient relationship, then the needs of the prospective parents and the intent to treat the thalassemic child are important issues in finding an ethically acceptable resolution. Can autonomy in this case be circumscribed by physician options offered? If the physician thinks the chance of benefiting the thalassemic child is 3% and the risk of harm by the selective manipulation of the embryo is theoretically 20%, is the physician bound to offer the procedure? If the parents know these probabilities are they within their autonomous bounds to accept the risk of harm to the future child on the basis of a rare chance to cure the sick child? Are the parents using the future child as a mere means or as a means and end for the hope of treating the sick child? Are the merits of benefit proportional to risks of harm? Who has the final say? Is the autonomy principle limited by the constraints of cost for such heroic treatment? Can the social policy of selective IVF reproduction be limited in order to restrain unlimited requests? If the policy permits selective IVF for the family in our case, can it allow selection for nontherapeutic reasons? Where are the limits justified by respect of individual autonomy and the good of the whole community shaped by policies of justice?

The questions posed relevant to the case at issue point to the larger ethical dilemma of balancing the tensions of autonomy and justice in cases where extraordinary medical technology allows the potential to help a patient but risks unknown harms. It might be equally true in future uses of genetic medicine, testing, screening, selection and enhancement. If the reproductive technologies are unlimited in scope and application, it may be that genetic knowledge and reproductive technology will combine to create unprecedented ethical dilemmas. If one case can be analyzed in such a way as to recognize the importance of ethical principles and the need for larger policies guiding the use of technology, then the acquisition of new ways of treating illness need not lead to greater inequality but to better ethical reflection and dialogue.

References:

Danis, Marion and Larry Churchill. 1991. Autonomy and the Common Weal. Hastings Center Report 21: 25-31.

Feinberg, Joel. 1990. The Moral Limits of the Criminal Law. Vol IV, Harmless Wrongdoing. New York: Oxford University Press.

Gauthier, Candace Cummins. 1993. Philosophical Foundations of Respect for Autonomy Kennedy Institute of Ethics Journal 3: 21-37.

Gauthier, Candace Cummins. 2000. Moral Responsibility and Respect for Autonomy: Meeting the Communitarian Challenge. Kennedy Institute of Ethics Journal 10: 337-352.

Green, Ronald M. 2001. What Does it Mean to Use Someone as “A Means Only”: Rereading Kant. Kennedy Institute of Ethics Journal 11: 247-261.

Kant, Immanuel, [1785] 1993. Grounding for the Metaphysics of Morals, trans. James Ellington, Indianapolis: Hackett Publishing Company.

Rawls, John. A Theory of Justice. Cambridge Ma: Harvard University Press, 1971.

Tomlinson, Tom and Howard Brody. 1990. Futility and the Ethics of Resuscitation. Journal of the American Medical Association 264: 1276-1280.

Walzer, Michael. Spheres of Justice: A Defense of Pluralism and Equality. New York: Basic Books, 1983.

Zaner, Richard M. Justice and the Individual in the Hippocratic Tradition. Cambridge Quarterly of Healthcare Ethics 5 (1996): 511-518.