Bioethics arose due to rapid scientific and technological progress in health care. Modern medical personnel deal with entirely new conditions of human bodies. The deeper scientists immerse in the study and change of the natural laws, the more significant moral and ethical risks society faces. As a result, doctors solve not only clinical problems daily but also face moral problems of choosing one or another action. To avoid error, a professional must be able to make the right decision, which requires special moral and ethical knowledge. Bioethics is seeking answers to questions about ensuring human rights and dignity and the use of new medical knowledge and technologies.
The Ethical Issue
The proposed scenario is fictional, designed to discuss the relevant ethical dilemmas – any similarity to real people or events is coincidental.
The married couple, Sarah and Jack, are expecting their first and desired child after a year and a half of trying to get pregnant. During prenatal DNA diagnosis, a gene was identified indicating Huntington’s disease in a child. Their doctor suggests that parents consider the option of an abortion. However, the parents have controversial opinions, change them over time, and cannot make the final decision.
Faced with ethical dilemmas in their practice, physicians can use tools to make decisions. At the same time, specialists must comply with ethical principles – veracity, fidelity, nonmaleficence, beneficence, and other concepts (Mennella & Karakashian, 2020). The bioethical framework for the decision-making will allow assessing the necessary aspects – ethics, patient views, and the capabilities of doctors (Forte et al., 2018). Sometimes, for their safety, physicians can rely too heavily on patients’ autonomy and leave them without proper guidance on medical aspects (Forte et al., 2018). For this reason, it is vital to balance the application of ethical principles and medical knowledge.
The first step of decision-making involves a detailed consideration of the problem. The focus at this stage shifted to the ethics of accuracy and aspects of the disease (Forte et al., 2018). Guided by duty theory, specialists are obliged to make a correct diagnosis and present a prognosis for the child and mother. At the stage of diagnosis, the ethical dilemma of genetic discrimination of a child, which influences decision-making, rises.
Huntington’s disease (HD) is an incurable inherited autosomal progressive genetic disease. It is caused by the multiplication of the cytosine, adenine, and guanine (CAG), leading to the formation of huntingtin protein in the larger form, which damages brain cells (Brazier, 2020). Its main external manifestations are involuntary movements of the hands, legs, trunk, and facial muscles, accompanied by disorders in mood, behavior, memory, and thinking (Brazier, 2020). The average patients’ age when the first symptoms of Huntington’s disease appear is 40 years, but the disease can begin both later, up to 70 years, and much earlier – up to 20 years old. Unfortunately, treatment does not exist now, and the latest drug trials have failed (Harding, 2021). Thus, the prospect of the child is losing his or her cognitive skills, physical health, personality, ability to be independent, and the need for the help of a professional team 40 years later after birth.
At the first stage of decision-making, it is also essential to assess the health of the mother. For example, pregnancy after a year and a half, although a little long term, but is the norm for young women (Delisle, 2018). In the absence of additional gynecological problems and professional actions of the staff in case of an abortion, she will avoid complications and may repeat the attempt to get pregnant. However, further tests and checks are needed to establish the patient’s exact health condition. Sarah’s and Jack’s prospects for becoming parents also include opportunities such as adoption, artificial insemination, or surrogacy. The two latter variants can be considered preventive measures and selected depending on who is the carrier of the defective gene.
The second step of the bioethical approach is based on the ethics of understanding. At this stage, experts using empathy elucidate the patient’s views, preferences, and perceptions (Forte et al., 2018). Such actions correspond to virtue theory and help clarify what guides patients in making decisions. A doctor can understand possible aspects – how patients accept bad news, what their religion is and how it influences their views, and similar issues. It is important not to violate patients’ privacy, to respect their views and the confidentiality of information.
The third step is based on the ethics of situational awareness and uses information from previous steps. Guided by patients’ values, a doctor can describe options for action. The specialist should emphasize those measures that will be more morally acceptable to Sarah and Jack. For example, if abortion is not an acceptable option for future parents, it is necessary to warn them about the seriousness of the upcoming care when the disease manifests itself. If they do not want to consider the option of adoption in the future, the doctor may recall the possibility of artificial insemination or surrogacy. The description of the consequences of potential decisions correlates with consequentialist theory. Guided by their values, knowing all the options, Sarah and Jack can make a decision that will be considered the greatest good for them and their child.
Step four involves discussing acceptable options and making a final decision. Sarah, Jack, and their doctors should consider such ethical dilemmas – abortion rights, fetal rights, possible artificial insemination or surrogacy, adoption, wrongful life, and wrongful birth. Choosing an option in each of the dilemmas must be consistent with the patient’s values. A doctor’s role in making the decision, in this case, is to honestly describe all the consequences of the decision, guided by the veracity principle. Diagnostic accuracy, clear and complete description of the effects of having a child with HD will prevent wrongful birth and life claims (Parker et al., 2020). The doctor also cannot advocate for a decision that would harm the mother, for example, if an abortion would have serious consequences. Once specialists have described the diagnosis, prognosis, and possible solutions, they can only respect the patient’s autonomy.
Thus, ethical dilemmas have a profound impact on the practice of doctors today. The proposed scenario considers the situation when prenatal DNA testing revealed Huntington’s disease in a child. This case raises many dilemmas, starting with the method of diagnosis, which, on the one hand, can contribute to genetic discrimination. On the other hand, testing can prevent an unborn child from suffering from an incurable disease.
Potential solutions to the problem also raise ethical dilemmas – a right to an abortion, a fetus’s right to live, and other controversial issues. Since all possible solutions are legal in the United States, the doctor’s main task is to convey to the patients the consequences of various decisions. Such actions will correspond to ethical principles and will prevent possible wrongful life and wrongful birth claims. Moreover, since there is no established definition of fetal rights to life and dignity, physicians can only refer to patients’ autonomy and support them in making decisions correlated with their values and interests.
Brazier, Y. (2020). What you need to know about Huntington disease. Medical News Today. Web.
Delisle, R. (2018). How long does it take to get pregnant? Today’s Parents. Web.
Forte, D.N., Kawai, F. & Cohen, C. (2018). A bioethical framework to guide the decision-making process in the care of seriously ill patients. BMC Med Ethics 19(78), 1-8. Web.
Harding, R. (2021). Huntington’s disease clinical trial round up. HD Buzz. Web.
Mennella, H., & Karakashian, A.L. (2020). Evidence-based care sheet. Decision making: Ethical aspects. Web.
Parker, B. R., Armstrong, S. C., & Poirot, T. E. (2020). What’s unconstitutional about wrongful life claims? Ask Jane Roe… Def. Counsel J., 87, 1. Web.