Academic journal article Australian Health Review

Informed Consent in a Vulnerable Population Group: Supporting Individuals Aging with Intellectual Disability to Participate in Developing Their Own Health and Support Programs

Academic journal article Australian Health Review

Informed Consent in a Vulnerable Population Group: Supporting Individuals Aging with Intellectual Disability to Participate in Developing Their Own Health and Support Programs

Article excerpt

Introduction

Within any society there will be cohorts of people who are considered vulnerable to abuse and exploitation by other individuals, groups or the state. An example of this situation can be seen with the Nazi era in Germany, where government-sanctioned discrimination against Jewish people, political opponents, individuals with disabilities and other minority groups was widespread.1 The genocide of individuals of the Jewish faith during this period of history is widely recognised; less well known is the fact that tens of thousands of people with disabilities were subjected to extreme medical experimentation and ultimately killed as part of the Nazi regime before the commencement of the Holocaust.2 Legitimate concerns regarding human rights and (the potentially fatal) exploitation of vulnerable population groups for medical research purposes led to the development of the Universal Declaration ofHuman Rights in 1948 (http://www. ohchr.org/EN/UDHR/Documents/UDHR_Translations/eng.pdf, accessed 18 July 2016) and the Nuremberg Code of Ethical Practice in 1949 (http://www.cirp.org/library/ethics/nuremberg/ , accessed 18 July 2016). The Declaration and the Code, and subsequent similar statements such as the Declaration of Helsinki,3 established the ethical boundaries for interacting with human participants4 and specifically mandated the need for subjects to give voluntary consent to participate in research and for the giving of personal information.5

However, it is arguable whether this Code has been entirely successful, because vulnerable people can still be exploited in various areas of their lives, including research.6 In particular, there remains the need to ensure that individuals are not only able to indicate their consent, but that they also have the necessary capacity to give this consent from an informed position.7 Although vulnerability and capacity are distinct concepts, the intersection of these issues causes a significant dilemma for adults with intellectual disability. This is due to the fact that there is a worldwide movement towards person-directed service delivery for all people,8 as well as an ethical and legal requirement to facilitate self-determination by directly involving individuals with intellectual disability in decision making about their life. These problems are particularly relevant for both generic and specialist healthcare settings supporting people with intellectual disability who have significant health comorbidities,9 emerging age-related problems10 and the associated issues with end-of-life and advanced care planning.11 Government-mandated principles for disability support providers specifically outline the necessity for direct contribution and participation of individuals with intellectual disability in determining and approving their own health and support programs;12,13 however, concerns remain about the capacity of individuals with intellectual disability to make informed decisions.

In order to address concerns about potential abuse or exploitation, entities such as the World Health Organization14 and the National Health and Medical Research Council15 have developed specific ethical guidelines for working with groups deemed to be vulnerable. Although underpinning structures such as these are needed to prevent abusive situations, it can also potentially result in situations whereby the 'voice' of specific sections of the community can be lost when certain groups, such as individuals with intellectual disability, are automatically assumed to lack capacity or appropriate support mechanisms are not implemented to assist their participation.7,16 A specific impediment that limits potential participation of individuals with intellectual disability is the need to provide ' informed consent' before imparting any personal information or agreeing to any health care plan, including advanced care directives. Definitions of informed consent vary around the world;17 however, the general principles of informed consent refer to the individual being able to understand and comprehend sufficient information, to voluntarily arrive at a decision about further participation and to then clearly and independently express this decision, generally through signing or marking appropriate documentation. …

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