Kenneth Wei-Qiang CHOO
Faculty of Law, National University of Singapore, Singapore
Yong Loo Lin School of Medicine, National University of Singapore, Singapore
The World Health Organization considers depression as the worldwide leading cause of disability, which contributes greatly to the global burden of disease. As such, epidemiological studies of depression become important in guiding public health policies to pick up and provide assistance to individuals with depression, as well as to reduce its prevalence through elucidating and targeting its risk factors.
The conduct of epidemiological studies requires active participation from the population being studied. But because the diagnosis of depression is strongly associated with stigmatization and unfair discrimination, the recruitment of research participants may be a challenge. Furthermore, there also lies the ethical issue of whether disclosure is justified when a participant is found to have depression or requires some sort of treatment. This essay argues that the risk of unfair discrimination should be eradicated, or at least mitigated, in order to enable population-based research into this disease.
Discrimination and Impact on Research Participation
Individuals with depression face unwarranted discrimination in many aspects of their daily life. This discrimination stems from myths commonly associated with depressed individuals, such as perceptions that they are mad and dangerous.
This discrimination can surface in many areas, such as in employment. For example, individuals with depression are commonly unemployed and underemployed. These figures can be three to five times higher than those without a history of mental illness. Even in employment, depressed individuals are treated less favorably than their non-depressed counterparts and receive less benefits and opportunities for promotion. Furthermore, they may become targets of gossip, resulting in them feeling “rejected or ostracized in the workplace”. This discrimination continues even after recovery from depression. Only 9% of employers are always or usually willing to employ an individual with a history of mental illness, while 28% of employers never or only occasionally do so.
This culminates in a vicious cycle. Such discrimination creates an obstacle to social involvement and successful vocational integration for depressed individuals, and also leads to negative personal experiences in relationships, parenting and childcare, and work. These individuals may then end up withdrawing from social and occupational activities and give up trying to live life as a normal and healthy person. They may delay or avoid seeking help completely, or choose not to comply with treatment recommendations for fear of being negatively judged by others.
Against the backdrop of prevalent discrimination against individuals afflicted by depression, the general population may be averse to participate in related research for fear of being negatively labelled by their community, especially if they are found and informed by the investigators to have depression. As such, a "to inform" policy adopted by the researchers may end up turning away potential research participants, whereas a "not to inform" policy could compromise the well-being of depressed individuals in accessing treatment that is available and relatively affordable. It must be highlighted that such considerations are less significant or entirely irrelevant for other health conditions that do not present any risk of stigmatization.
Ethical Considerations When Whether to Inform
In a therapeutic setting, patients have a right to be informed of their medical diagnosis. Doctors owe their patients a duty of care, which may encompass the disclosure of medical information pertaining to a patient’s diagnosis. Practically, doctors must offer their patients enough information about their diagnosis so that the latter can go on to make informed choices on their treatment options.
However, an interesting dilemma arises when we consider the right of the patient to not-know. In the context of depression research, the dilemma can be more acutely described as: “Does the research participant have a right not to know his own diagnosis?”
Before we embark on an ethical analysis of the basis of the various positions that can be taken, we need to lay down and describe the few potential situations under which an ethical problem of this kind arises:
- The research participant expressly says that he does not want to know the results;
- The research participant does not indicate whether he wants to know the results; or
- The research participant expressly wants to know the results.
There are a few reasons why an individual might refuse knowledge of his diagnosis. Firstly, the individual might not be mentally prepared for the consequences of such a diagnosis. Secondly, it might have unwanted effects on his lifestyle choices. Thirdly, it might place the patient under an obligation to disclose his condition to employers, future employers, and insurance companies. Therefore, it will not be unusual for the patient to assert a right to “not-know” since the knowledge of his condition might bring about a whole host of unwanted implications and effects.
Situation 3 (see above) is in most instances unproblematic, assuming that pre-recruitment tests accurately identify potential participants with depression. As there is a concurrence between the patient’s express (and informed) wishes, there is an ethical and legal duty on investigators to make disclosure. The other two situations are much more problematic.
A patient’s right to refuse knowledge of his diagnosis is predicated firstly on the notion of consent, and secondly on the right to self-determination. Society places a high premium on the rights of individuals to live as they choose (within socially prescribed limits) and therefore, individuals in society should have the right to consent and to withhold consent. However, consent is not an all-powerful trump. For instance, no one has a right to kill another, even if the “victim” has consented to it. Consent prevails when there are no countervailing moral or social concerns that limit the right to self-determination. We need to weigh the right to autonomy of the research participant against the ethical responsibility of the investigator, as well as the public interest in ensuring that individuals have access to the medical care that they need.
We posit that a pseudo-contractual analysis can be taken to resolve the ethical dilemma. Where the research participant has expressly laid down the “terms” of his participation in the research, such terms should be complied with. This would prima facie resolve Situation 1, since it would be ethical to comply with his wishes. Where consent has not been expressly given, we can draw inspiration from the test for the implication of terms in contract, or more precisely, by necessity. The investigator’s ethical duty to inform would take priority where it is necessary for the patient to know of his condition. The precise details of what would satisfy this criterion of “necessity” may well be determined by the scientific community, or by the law-making mechanisms of the country.
The “necessity” approach would also take into account what is required to protect individuals. For example, it would be necessary to disclose such information to the patient if his condition is so severe so as to constitute a danger to himself. In this case, it would be entirely justifiable for the medical community, as well as society at large, to place a higher premium on the protection of the individual over his right to autonomy — even when he has expressly refused knowledge of his diagnosis. This is justifiable on the basis that it is necessary, in severe cases, to inform the individual of his diagnosis so as to enable him to take positive steps to protect himself and seek appropriate treatment. It can also be argued that in such a scenario, the individual will not have the capacity to “contract”, and therefore, his express wishes should be disregarded to the extent that they prejudice his health and well-being.
We contend that a pseudo-contractual analysis would resolve the inherent conflicts between individual autonomy and the ethical duties of investigators. It emphasizes individual autonomy while being flexible enough to allow for countervailing considerations to take priority where it is necessary for the well-being and protection of the individual. An approach which imposes medical information on research participants against their wishes would possibly deter people from participating in such research. On the other hand, an approach which prioritizes the consent of individuals may deny them of the very assistance that they need. Ultimately, it may be in the interest of certain individuals to be excluded from research participation, although the therapeutic or public health dilemma remains.
In closing, discrimination not only negatively impacts the general well-being of an individual afflicted by depression, but also limits research that could be carried out to improve or treat this condition in the long run. To better enable epidemiological research into depression, the risk of stigmatization and discrimination must be mitigated or eradicated. A more durable solution may be legislative intervention to explicitly prohibit certain forms of discrimination, such as in obtaining employment or insurance coverage. A number of jurisdictions have already introduced legislation to address concerns over unfair discrimination. In the United Kingdom (UK) for instance, the Equality Act 2010 expressly prohibits discrimination against individuals diagnosed with depression or other mental illnesses. In the employment context, the employer is prohibited under the Act from asking for the psychiatric history of an individual who has either recovered from depression or who is in a remissive state of depression, as this might unfairly disadvantage the individual. Similar legislation is also present in the United States of America, in the form of the Americans with Disabilities Act 1990. We argue that such anti-discriminatory legislation would be more effective in deterring discriminating against individuals with depression, as well as those who are in a remissive state of depression. Such a safeguard will also better assure these individuals that their privacy and well-being will not be compromised through participation in research.
- An example of the tension between protection of individual freedoms and promotion of public interests is provided by the famous ‘harm principle’ that was advanced by John Stuart Mill. See John Stuart Mill (edited by David Bromwich and George Kateb), On Liberty. New Haven: Yale University Press, 2003.
- In a number of legal cases, the courts recognise the relationship between researchers and research participants to be ‘special’ and not merely contractual. For instance, see Grimes v Kennedy Krieger Institute 366 Md. 29 (2001).
- For instance, treatment for mental illness may be enforced in Singapore under certain conditions that are prescribed under the Mental Health (Care and Treatment) Act, Cap. 178A of Singapore.
About the Author
Wei-Liang Lee is a third year student at the National University of Singapore's (NUS) Faculty of Law. He is the Vice President of the 34th Law Club Management Committee (2013 - 2014), and was also the Law Camp Chairperson of the NUS Law Freshmen Orientation Central Committee (2012-2013). His primary areas of interest in the law include Constitutional Law and Tort Law, as well as how legal reform can be a powerful tool in effecting positive social change.
Kenneth Choo is a fourth year medical student at the National University of Singapore's Yong Loo Lin School of Medicine. He is the Lead for the Psychiatry Clinical Speciality Interest Group, and was a recipient of the University's Lee Foundation Professionalism Award in 2013. He has an interest in Psychiatry and hopes to make a difference to psychiatric patients, both past and present, through his work.
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