This essay aims to answer this question by evaluating the role of genetic responsibility in doctor-patient confidentiality in the context of individuals suffering from Huntington disease (HD). HD is an uncurable and progressive neurological disorder characterised by late onset of motor, cognitive and behavioural changes. HD is an autosomal dominant disorder where an individual offspring has a 50% chance of inheriting the HD causing allele (Caron et al., 2018). Genetic responsibility is the responsibility of one’s genetic information to self and family as it is both individual yet transgenerational familial information (Statement, 1998). Several criteria must be met before the doctor makes a choice to disclose or not to disclose. The criteria are attempts were made to encourage disclosure, to warn them about the genetic risks it has to at-risk relatives and to ascertain an individual has the mental capacity to make an informed choice (Statement, 1998, Wusthoff, 2003).
The Declaration of Geneva outlines the duties and ethical principles of doctors: patient’s autonomy and non-maleficence (Parsa-Parsi, 2017). Presently, patient’s autonomy is one of the key cornerstones of medical ethics. Respect for autonomy in genetic responsibility stipulates one’s right to choose who and what degree they would like their relatives to know about their genetic information (Wusthoff, 2003). Doctors can educate the patient on the implications for at-risk relatives but they are bound to the ethical duty of doctor-patient confidentiality (Statement, 1998).
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“Primum non nocere,” is the obligation of non-maleficence where one should prevent from taking actions that constitutes harm (Hakimian, 2000). Doctors should factor in the possibility that some relatives might not want to know this genetic information and hence disclosure would result in more harm. Disclosure may cause psychological, social and financial harm as they could be subjected to genetic stigma or are unable to obtain employment and/or insurance (Statement, 1998). Findings by Penziner et al. demonstrated that this fear is very real and prevalent where 90% of employed HD participants revealed their HD status but nearly all would not disclose this information to future employers (Penziner et al., 2008). Study by Oster et al. cited that the main concern for relatives to remain untested is the fear of losing health insurance. Additionally, 41.6% chose to pay from their own expenses for testing to hide their genetic risks from their insurer (Oster et al., 2008). Especially in the case of HD where there is no cure, some individuals would rather be ignorant to the risks. Lastly, American Society of Human Genetics dictates that disclosure is allowed when the disclosed information is used to prevent harm and the harm is serious and imminent. However, since HD is a progressive untreatable disease, International Huntington Association render it impermissible to disclose this genetic information without consent (Godard et al., 2006).
On the contrary, it can be debated that a doctor has a duty to warn at-risk relatives even if this breaches the patient’s confidentiality. Individuals in favour sees this duty as a duty to prevent foreseeable harm (Godard et al., 2006). Even though knowing one is tested positive for HD does not prevent this disease from manifesting, it prevents the transmission of HD to future generations through informed reproductive choices (Hakimian, 2000). Findings from Decruyenaere et al. showed that 1/3 chose not to have children and 1/3 chose prenatal diagnosis after performing predictive testing (Wusthoff, 2003). Furthermore, knowing one’s risk of HD permits them to make certain health and employment choices. If they begin to exhibit symptoms of HD like depression and irritability, early interventions can be made to tackle these manageable manifestations (McCusker and Loy, 2017) Hence, it can be argued that at-risk relatives cannot make these decisions if they are unaware of their genetic risk. From this viewpoint, the autonomy of at-risk relatives is equally important and knowledge is favoured over ignorance as doctors are expected to benefit the patients (Godard et al., 2006).
Lastly, disagreements were made against the restrictive requirement that the threat must be serious and imminent to permit disclosure. However, many genetic diseases including HD require time to manifest (Bell and Bennett, 2001). Additionally, can knowing the degree of likelihood of having HD and the likelihood that genetic predisposition leads to actual manifestation dictate the seriousness of the disease (Lemmens and Austin, 2001)? These considerations are controversial as it is difficult to reasonably answer these questions with precision.
Based on the above discussion, I have concluded that in the context of HD, a doctor should not disclose a patient’s genetic diagnosis to at-risk relatives without consent. If a patient is mentally capable of understanding the genetic risks and attempts has been made by the doctor to encourage disclosure, I believe the doctor should respect the patient autonomous decision. I do recognise that some individuals might debate that a patient refusal to disclosure would be unfair to the autonomous decision making of at-risk relatives. Often, when individuals make such a claim, it is in the context that the disease can be prevented or treated with early interventions. However, with HD being an uncurable disease, an individual might place their at-risk relatives in more harm as they need to bear the genetic discrimination that comes with HD. Knowing one’s risk of HD might affect their employment and insurance opportunities. In addition, HD is a chronic disease with a late onset of symptoms, individuals can lead a relatively normal life before tell-tale signs were to appear. Therefore, not knowing one’s genetic risk of HD might prevent them from facing such genetic discrimination since young. It is important to note that as genetic techniques get more advanced, it would be easier to study the genetic components of disease. Therefore, we might be able to find treatments for diseases with genetic components. Hence, this recommendation might not stand and we would need to review it.
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