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May 20, 2013 | Posted By Jane Jankowski, LMSW, MS

Helping individuals with mental retardation maximize their autonomy and enjoy fulfilling quality life experiences is often at the core of ethical arguments surrounding healthcare options for individuals with these disabilities. Having worked with adults with mental retardation I have known some who gave birth, some who got married, and many who were sexually active. There are ranges in function and comprehension in any population group, and the options ought to apply fairly with consideration for the patient’s preferences and best interests guiding decision making. I will argue that in some cases, sterilization promotes autonomy and ought to be considered an option for those with mental retardation as it is for those without any cognitive impairment.  The benefits are the same for person with mental retardation as for any individual – freedom to engage in sexual activity without the risk if unwanted pregnancy. Unlike the old sterilization policies which allowed procedures to be performed over the objections of patients and guardians, this elective procedure may be permissible if an appropriate consent process is in place and engages the patient and his or her support network in the conversation. Objections to allowing sterilization for persons with cognitive disabilities suggest that the procedures unfairly limit reproductive rights of these individuals; however, the benefit of freedom of sexual expression without the burdens of birth control may be worth it to some persons with disabilities and they should not be prohibited because of unethical use of sterilization in the past. For persons with mental retardation who wish to have children of their own, it is a supportable endeavor providing the same criteria of preference and best interests are applied during decision making.  The most challenging situations are those where the individual with cognitive impairment wishes to have a sexual relationship but does not demonstrate the capacity to appreciate their limitations as potential parents, however, here, too, a model which respects both individual preferences and best interest is useful. 

With successful advocacy efforts by and for individuals with disabilities, most persons with disabilities now reside in the community in settings that are the least restrictive environment possible. Community residences, apartment programs, and intensive care facilities in residential neighborhoods exist across the nation and are staffed by counselors and others who support the daily living needs of these adults.  Despite these efforts to create a normalized life, the tendency to infantilize adults with mental retardation persists, and decisions about sex and marriage are often dismissed as ‘impossibilities.’  In reality, many adults who have mental retardation date and are sexually active, or show interest in romantic relationships with others. While family and staff members caring for the individual may be intensely concerned about pregnancy, this may or may not be a worry shared by the individual. If the individual is denied the liberty to engage in a sexual relationship for fear a pregnancy will result this does not support respect autonomy. If the person does not want to have children or is unable to understand or appreciate the possibility of pregnancy, parenthood, and what that may mean, this does not mean he or she ought to be prohibited from having sexual relationships. As a measure of quality of life, being part of a physical and reciprocal relationship may be tremendously gratifying. In cases where standard birth control methods are not likely to be reliable due to the individual’s cognitive function (remembering to take a pill, understanding what a painful Depo Provera shot is for, using a condom correctly), sterilization may ultimately allow freedom to enter into and sustain satisfying sexual relationships. In cases where the fear and concern about unwanted pregnancy is removed, it seems plausible that the couple may experience increased support for continuing a safe and healthy sexual relationship and in some cases, long term relationships and marriage. 

For persons with mental retardation who wish to have children, the realities about how often persons with cognitive disabilities are able to retain custody and raise the children themselves ought to be discussed directly and honestly. Recognizing this preference and considering how this preference might be respected must include what the outcome of having a child could mean. Like many, persons with cognitive impairment may romanticize what it is like to have a baby – a living doll to love.  If a couple or a woman wants to have a baby, what are the possible outcomes? If the range of outcomes is acceptable, then it would be unfair to limit this opportunity with sterilization. Most children born to parents with mental retardation are raised in foster care or by other family members. In rare cases, parents with cognitive impairments may raise their children providing they have enough support and adequate functional skills to ensure the children are safe and their needs are met. Other infants are adopted outside the family. It could be argued that parents without known cognitive impairments often lack the ability to keep their children safe and ensure needs are met, however, for those who have been in need of services to  manage daily living prior to becoming parents it seems reasonable to see the difficulties of parenting as a predictably stretch already limited capabilities. Objections that persons with mental retardation ought not to bear children because they cannot raise these children and therefore represents a harm to the parent and child is short sighted, though. Bearing a child which may receive childrearing from someone other than the biological parent does not necessarily confer a harm when this outcome is anticipated and accommodated with thoughtful planning and support.

In sum, applying the standards of patient preferences and best interests ought to support decision making regarding procreation. Respecting preferences carries the obligation to provide honest information and help individuals think about their options and what kinds of outcomes they may expect. Autonomy is upheld when the individual is able to engage in the life choices that are meaningful to him or her and harm is minimized when the risks and burdens are anticipated and accommodated.

The Alden March Bioethics Institute offers a Master of Science in Bioethics, a Doctorate of Professional Studies in Bioethics, and Graduate Certificates in Clinical Ethics and Clinical Ethics Consultation. For more information on AMBI's online graduate programs, please visit our website.

0 comments | Topics: Autonomy, Disability, Quality of Life, Research Ethics


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BIOETHICS TODAY is the blog of the Alden March Bioethics Institute, presenting topical and timely commentary on issues, trends, and breaking news in the broad arena of bioethics. BIOETHICS TODAY presents interviews, opinion pieces, and ongoing articles on health care policy, end-of-life decision making, emerging issues in genetics and genomics, procreative liberty and reproductive health, ethics in clinical trials, medicine and the media, distributive justice and health care delivery in developing nations, and the intersection of environmental conservation and bioethics.
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