Computer Program Helps Resolve Ethical Decisions About Genetic Testing

DALLAS—A new interactive computer program, The Ethics Companion, iscurrently under development to help physicians think through ethical dilemmasin genetic testing for breast cancer, Gail Tomlinson, MD, PhD, of the Universityof Texas Southwestern Medical Center, said at a poster paper at the SanAntonio meeting.

"It has become clearer to us and others in the field that thereare many far-reaching ethical questions involved in undertaking genetictesting," Dr. Tomlinson said. She added that the program is a jointproject of UT-Southwestern and Southern Methodist University's Carrie McGuireCenter for Ethics and Public Responsibility.

Once the program is fully functional, it will consist of a series ofindividual cases, each of which poses a different ethical dilemma in geneticstesting for breast cancer, as well as the scientific background and ethicalconcepts necessary to provide an ethics-based education for health careprofessionals who handle genetic information on breast cancer risk.

The program guides the health care professional through the case studies,to help him or her learn the processes of making ethical decisions, Dr.Tomlinson said. Users will also be able to plug in their own cases andwork through them in a similar fashion.

Ideally, she said, the program will help users solve problems, "butit's not going to provide definitive answers; the purpose, rather, is toexpand the user's knowledge base and help the user think about differentramifications of possible actions."

Because of its strong educational component, the program, which is nowundergoing testing, could be used for teaching at the undergraduate level,in medical schools, or in residency programs, she said.

In the case study Dr. Tomlinson presented, Rachel, a woman in her 20s,wants to undergo genetic testing for breast cancer because her aunt hadbreast cancer and is known to be a carrier of BRCA1. Her mother, Andrea,doesn't want anything to do with genetic testing.

Rachel, who is engaged to be married, wants to have the test to helpher plan whether to have children early or later in life; if she knowsshe is a carrier, she may choose to have children early and then undergoprophylactic oophorectomy.

If Rachel tests positive for the BRCA1 mutation, Andrea will know thatshe is a carrier, but Andrea doesn't want this information. Is it ethicalto test Rachel?

In this case, the stakeholders are Rachel, Andrea, other family members,Rachel's fiancé, and her unborn children.

The possible actions are as follows:

Work with Andrea to try to get her to consent to testing. (If this fails,other actions must be considered.)

• Test Rachel and let her do what she wants with the results.
• Test Rachel and ask her to keep the results secret.
• Test Rachel and counsel Andrea about the results.
• Refuse to test Rachel unless Andrea consents.

Ethical Principles

The traditional ethical principles involved are as follows:

• Justice (for each stakeholder in the dilemma).
• Duty and rights (eg, the physician's loyalty to his patients and respectfor their autonomy).
• Happiness (the consequences of each action for each stakeholder).
• Virtue (eg, the decision should allow the professional to maintainhis habit of honesty and self-respect).

The user scores each ethical principle on a scale of 1 to 10 for eachpossible action, eg, for the principle of happiness, each stakeholder wouldreceive a score for each possible action (1 = great harm; 10 = great pleasure).

The program then comes up with a calculation for each action, a "morallandscape or map, which doesn't necessarily tell you the right answersbut tells you what your thought processes were and what you emphasized,"Dr. Tomlinson said.