CASE ANALYSIS How to Breach the Gap Between

CASE ANALYSIS How to Breach the Gap Between Theory and Praxis.

Ethical Problems and Decisions • Ethical decisions are tough to make because of disagreement among stakeholders. • Ethical problems are cognitive, volitional social. • Cognitive: What’s the right thing to do? • Volitional: Will I do the right thing? • Social: Is it going to be accepted?

Case Study: Willowbrook • Hepatitis study at Willowbrook state school for mentally retarded children: • Study conducted on children from 1958 -1971. Hepatitis was major at Willowbrook. Children lived in unsanitary conditions that contributed to spread of hepatitis. Dr. Krugman was chief researcher and thought he could develop vaccine. Study involved deliberately infecting children. Excuse was that they were bound to contract it anyway. Children would be in well-staffed special unit.

• Not dangerous: they will have subclinical infection followed by immunity. Only children whose parents signed consent would participate. Though some critics argued that information to parents downplayed that children would be intentionally infected.

How To Evaluate Cases? First consider the sources of disagreement: Participants, facts, and norms. • Participants seek therapeutic benefit, researchers knowledge. • Facts: disagreement about probability and magnitude of harm. • Norms: disagreement about conflicting norms: autonomy/beneficence.

SFNO FRAMEWORK • The SFNO framework proposes 4 criteria to address issue: • 1. Stakeholders • 2. Facts • 3. Norms • 4. Options

1. STAKEHOLDERS • Who are the stakeholders? • Determine who has a stake in the decision and who will be affected? • Children, families, researchers, institutions, society. • Identify stakeholders and describe why/how they are affected.

2. FACTS What facts generate disagreement? What facts are relevant for a solution? Disagreement Facts: likelihood they would find a vaccine The magnitude of harm Parents’ permission Relevant Facts: Children’s lack of autonomy/Vulnerability Efforts made to minimize harm through maintaining sanitary conditions deliberately infected Hepatitis was widespread in school Infections would result in mild symptoms

3. NORMS • What principles are at stake? Which are relevant? Which conflict? • Beneficence: Find vaccine • Non-maleficence: deliberately infecting children. • Justice: Involved infecting mentally retarded children baring the burden without getting benefits. • Autonomy: Children could not consent.

4. OPTIONS • What actions/policies deserve consideration? What’s the ideal solution. What compromise solutions? • Not infecting them deliberately • Using voluntary population • Smaller population • Improved sanitary conditions • Sometimes researchers sacrifice people’s rights over quick results. Sometimes morality requires the other way around.

DISAGREEMENT INVOLVING COMPETING STAKEHOLDERS When disagreement among stakeholders, we may ask • What reasons exist for giving priority to a party over another? Safety of participants should have priority. • Who has authority. Informed consent gives participants authority? • A solution could have been to introduce a neutral third- party to asses the viability of the study.

DISAGREEMENT NVOLVING FACTS • Dr. Krugman believed that the probability of harming children in the study were lower that probability of harm for other children because of sanitary conditions and widespread hepatitis. • He was convinced that the study would yield a vaccine to benefit all. • A solution would have been improve sanitary conditions and use other population.

DISAGREEMENT OVER ETHICAL NORMS • There were other ways to benefit Willowbrook population. • What are the goals of the research? Krugman was a researchers. He was concerned about the children, but rather about gaining new knowledge for science and certainly for gaining reputation. • Utilitarianism, the ends justifies the means, is not a good way to go. Kantian norms or, as I prefer virtue care ethics, would take into account justice, compassion and benevolence.

DECISION • Under virtue care ethics, this study would not be permissible because it violates the principles of care. Care ethicists believe in the priority of compassion and principle of non-maleficence. • Human beings—especially retarded children—are not subjects of studies under any circumstances.

• A virtue care ethics would suggest that the study, if really necessary, be conducted on consenting, autonomous adults. • Animals are out of the question because cannot consent and do not serve as models to extrapolate information for humans. • The desired goal is not important enough to override people’s or animal’s values. • When you consider political context, you might see it in a different light. • Most research is redundant and done for the sake of universities getting $$$$