Huntington’s Disease and Ethics

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What defines Michael J. Sandel as a professor at Harvard? What makes his lecture on justice so stimulating and inspiring? The basic daily life of every instructor in a learning institution involves making appropriate decision in line with the Florida code of conduct for professionals. Every professional will in his everyday life strive to make right decisions that are for the best interest of his primary clients.

The code requires that the instructor acts in the best interest of the students. It further requires that a lecturer at a university who has plenty of time at his disposal would feel better offering his teaching services to students. The question to be answered in this case is whether this decision is wise enough and does it conform, to the stipulated educational guideline?

One of Michael J. Sandel’s famous examples is that torture is ethically justified especially in cases where it involves criminal activity. Are policemen right in torturing suspected criminals in order to get information out of them?

This case results in an ethical dilemma since the policemen on one hand is dealing with a dangerous criminal who may not cooperate unless tortured, but on the other hand is bound by professional codes of conduct requiring him respect the human rights of all suspects.

Since ethics is a set of mutual rights and obligations that ought to govern human relationships, the linkage between educational and ethical issues is hardly surprising. In any set up, like a university or college, disparities in knowledge and power between instructors and the institution managers is likely to create ethical dilemmas.

Any analysis of ethics on the discussion of leadership must eventually wrestle with the question of fairness. Impartiality and equitable treatment are essential to effective discussions; without them, efforts to encourage participation will be futile. These deliberations make us understand the ethical issues more clearly, especially in the medical field. Every decision a doctor has to make is pegged on matters of justice and ethics.

The advancement in technology in genetic testing places physicians in an awkward position. The patients risk being discriminated and consequent loss of healthcare benefits if there genetic influence is disclosed. This information may, however, help patients outline a plan for their future relationships and alignment of their objectives.

A child to a patient with Huntington’s Disease (HD) has a high probability of having inherited the abnormal gene from the parent thus possible development of HD (Terrenoire, p. 46). If patients do not know the outcome of their results, they live in fear and uncertainty. This leaves the doctor in a dilemma as to whether to perform predictive genetic testing for HD, an ultimately fatal disease.

The issue of who should participate in this testing vis avis family issues present ethical issues that physicians must handle with conscience (Terrenoire p. 92). While other predictive genetic tests allow patients to seek life-saving treatment before symptoms develop, no such option is available for patients with HD.

Even with the results of the test in hand, the only recourse patients currently have is to wait for the onset of symptoms. Siblings may differ in their desire to see the results of genetic testing if one parent is diagnosed with HD. Genetic counselors and other clinicians may hesitate to communicate results if not all family members are in agreement.

Autonomy includes an individual’s right to self-rule and individual decision making without undue influence from others. To respect patients’ autonomy, clinicians and health care workers must communicate well with their patients. This includes both active listening and providing sufficient information to facilitate patients’ decision-making.

Clinicians must know what information a patient wants and, perhaps more importantly, what information a patient does not want to know. The clinician must respect the patient’s decision and not deviate from that it. This presents an ethical dilemma to clinicians especially in situations where patients are hesitant to pursue medication for diagnosed conditions.

Clinicians must adequately describe the process of HD genetic testing and the implications of its results. Patients should be encouraged to discuss the process with their family members before the testing, since the results could have significant implications for other relatives.

Once a decision is made, clinicians must respect and abide by that decision. It would not be ethically appropriate for a clinician to convince a patient to undergo testing that is not desired. Nor would it be appropriate for a clinician to disseminate results to individuals who choose not to see them.

Clinicians must fully inform couples of child-bearing age of the factors to consider in planning a pregnancy, performing prenatal testing, and available options after results are known (Hadley, w. 406). While the expected or future children of HD patients are not able to exercise their right to autonomy, their parents have to decide for them.

Beneficence involves taking an appropriate action for the good of the patient or “[doing] whatever good one reasonably can for another person” (Hadley, w. 400). Clinicians need to evaluate each case to ensure that treatments or testing is providing a net benefit for the individual.

What is in the best interest for one person may vary considerably for another individual, even if both are diagnosed with the same disease. Clinicians must consider the risks and benefits of each recommendation to provide a net benefit to each patient.

In the case of predictive genetic testing for HD, clinicians and other health care team members must consider the benefit to the patient. However, they are also ethically bound to consider the benefit to family members and potential children of HD patients. Beneficence may decide that clinicians share the results of HD testing with the children of a patient with HD.

Daughters of HD patients may acquire a greater benefit from this information as they consider planning their own families and future life plans (Hadley, w. 400). This concept also relates to the confidentiality of genetic testing information. With this information, daughters of HD patients can assess their plans for conceiving children normally with or without prenatal HD testing or choosing adoption.

At this time, the results of a prenatal screening test for HD will not affect the physician’s ability to prevent, treat, or cure HD. However, the parents of these children may think that it is also beneficial to know as soon as possible in order to consider all life planning options.

The principle of non-maleficence relates closely to the principle of beneficence. In health care, non-maleficence is the principle that states that clinicians must do no harm and work to reduce damage to their patients (Hadley, w. 401). In conjunction with beneficence, there must be a net benefit to the patient. Again, the evaluation of damage and welfare must be individualized to each patient.

Similarly, children of HD patients may feel more pain if they are not told of their parent’s diagnosis than those who are aware of the disease. In order to comply with non-maleficence, clinicians must comply with their patients’ wishes in regard to performing genetic testing and the subsequent dissemination of results.

Clinicians and patients must also carefully consider options regarding pregnancy in patients who carry the HD gene. Should they allow a pregnant lady, suffering from the HD to continue carrying the baby? This question leads to ethical dilemma as the clinician is bounded by ethics to do no harm both to the mother and her unborn child as well.

In considering the implications regarding predictive testing for HD, one common requirement is clear, i.e., complete communication between patients with HD, their family members, and clinicians.

An individual who might never have consciously or otherwise contemplated the possibility of direct involvement might have life and hope blighted, and survival without development of the disease might be little compensation for a lifetime of anxiety, dread, and single status.

In order to make the best decision, I chose the solution that, the highest ethical approach to the dilemma of whether predictive genetic testing for HD should be performed. Allowing patients the option to seek out this study provides patients with the freedom to make their own decisions regarding their genetic fate.

All the parties involved must communicate clearly and frequently to ensure that everyone hears and understands the same information. To this end I find Sandel’s Justice What’s The Right Thing To Do? Whatever the action a physician takes in this case is ethically justified if it is in the benefit of the patient and any other involved close relative.

Works Cited

Hadley, Jack et al. “Covering the Uninsured in 2008: Current Costs, Sources of Payment, and Incremental Costs.” Health Affairs, 27.5 (2008): W 399-414. Print.

Terrenoire, Gwen. Huntington’s Disease and the Ethics of Genetic Prediction. Journal of Medical Ethics, Philadelphia: Carey, 1992. Print.

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Huntington’s Disease and Ethics

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