Highlighted Ethical, Legal, and Social Issues

Many important ELSI issues are discussed throughout the CD-ROM. The following materials discuss additional ELSI issues that may arise in the context of psychiatric genetic counseling.

Informed Decision Making

One of the main purposes of genetic counseling is to help clients make well-informed, thoughtful decisions that are their own. In bioethics, informed decision making has three main elements:
[click on each to get content, below]

[Element 1] The health-care professional’s obligation to provide the client with adequate information

[Element 2 ] The client’s understanding of this information

[Element 3 ] The client’s process of voluntary decision making

 

[Informed Decision Making: Element 1]

A series of cases from the middle of the twentieth century in both state and federal courts produced the reasonable person standard, which guides the health-care professional in determining when his or her obligation to educate the patient appropriately has been met. This standard is client-oriented and based on the client’s needs for information. In genetic counseling, this means that the counselor should be prepared to explain, when it is available, information about the following:

• the psychiatric diagnosis of the affected individual, and the effects of the diagnosis on individuals and their families;
• the etiology of common complex disorders, including what is known and what is not known about the role of genes, proteins, and environmental factors;
• the etiology of the relevant psychiatric disorder, including what is known and what is not known;
• in general terms the treatment and support that is currently available, and the variability of response to treatment;
• the effects of the psychiatric disorder on pregnancy (generally determined in consultation with the referring physician), including potential teratogenic effects of medications and the effects of discontinuing medication during pregnancy, as applicable;
• procedures for estimating risk of occurrence of the disorder, e.g., empiric risk figures and their application to individuals; and
• the range of estimated risk for the client of the occurrence of the disorder, including the prospect that it is impossible to estimate risk.

[Informed Decision Making: Element 2]

The client needs to understand the information the counselor has provided. To do so, the client exercises what is called decision-making capacity, which involves a client’s ability to

• pay attention to the counselor,
• absorb, retain, and recall the information as needed,
• reason from present events (such as medical treatment) to their likely future consequences (prognosis), taking account of managing uncertainty,
• understand that these consequences can happen to him or her, and
• evaluate these consequences on the basis of his or her own values.

[Informed Decision Making: Element 3]

It is important that the client’s process of decision making is voluntary, i.e.,

• the client should be free of substantially controlling or coercive influences in reaching a preference (about treatment or becoming pregnant, for example). These influences can be internal, e.g., from fear, or external, e.g., from spouse, parents, the counselor, or other health-care professionals.
• the client should be able to express a preference on his or her own.

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Informed Decision Making: Pediatric Assent

The American Academy of Pediatrics Bioethics Committee has articulated ethical standards for the role of children in health-care decisions. In clinical practice, this standard implements the concept of pediatric assent. The academy recognizes that children are best understood to possess decision-making capacity on the basis of their psychosocial development, not their age, but the academy has yet to explore the implications of pediatric assent for genetic counseling for complex psychiatric disorders. Nevertheless, there appears to be the following implication: denying or restricting access to genetic services for adolescents who are capable of mature decision making would not be ethically justified. While this issue has not yet been significant in psychiatric genetic counseling, it is possible that the future could bring serious concerns related to genetic counseling and testing for psychiatric disorders in adolescents. Given the typical onset of the major psychiatric disorders in late adolescence and early adulthood, testing of minors could become an issue if predictive testing becomes available.

The implications for genetic-counseling practice appear to be the following: for adolescents, pediatric assent calls for the adaptation of informed decision making to the developmental capacity of the adolescent. Parents should be involved and urged to support their child’s decision-making capacity. When the adolescent’s preference disagrees with that of his or her parent(s) and that preference reflects mature decision making, then the counselor should be an advocate for the client’s preference by serving as a good-faith negotiator between the client and his or her parent(s).

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Impaired Decision-Making Capacity

All adult clients are presumed to possess adequate decision-making capacity. This assumption is standard in both bioethics and law, and means that the health-care professional faces the burden of proof to establish that the client is so significantly impaired in decision-making capacity that a surrogate decision maker is required.

It is well recognized that psychiatric disorders can impair decision-making capacity. Yet, there is no clear-cut method for determining precisely the degree of impaired decision-making capacity or the threshold below which a client should be judged to have significantly impaired decision-making capacity. When you have concerns about impaired decision-making capacity, seek appropriate consultation in psychiatry.

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Surrogate Decision Making for Adults

When clients experience impairments of decision making severe enough to preclude adequate participation in decision making about genetic counseling, others need to make decisions for them. There are two standards that guide surrogate decision making, the first of which is preferred because it ensures that the client’s rights and welfare are of utmost importance:

1. Substituted-judgment standard. The surrogate should make decisions on the basis of the client’s values and preferences.

2. Best-interest standard. The surrogate should make decisions based on a careful evaluation of the health-related and other interests of the client.

When providing genetic counseling to a surrogate decision maker, the counselor should urge the surrogate to make decisions as much as possible on the basis of what is important to the client. This strategy implements the substituted-judgment standard. The best way to implement this strategy is to ask the surrogate, "Tell me what is important for (client’s name) about (issue at hand)." This question focuses the surrogate on the client’s values and preferences. It is best to avoid questions such as "What do you think should be done?" because this question invites the surrogate to mix his or her values and preferences with those of the patient. Surrogates may be inclined to mix their values with those of the patients for the best motives, for example, out of love and concern for their family member. But the substituted-judgment standard requires that the parties involved minimize this mixing of values and perspectives on the client’s interests.

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Confidentiality

Confidentiality involves the obligation to protect health-related information from unauthorized access. There are two major bases for the obligation. The first involves the benefit to clients of maintaining confidentiality. Clients are more likely to be forthcoming when they can be confident that personal health-related information will be protected. Confidentiality thus promotes information gathering, which is essential to client management. When the client has a condition that can be socially stigmatized, as is often the case for psychiatric disorders, one cannot overstate the importance of confidentiality. Diligent protection of confidential information also will help to prevent discrimination in insurance, employment, and education.

The second basis for confidentiality involves an appeal to the client’s right to privacy. The right to privacy involves the right to control access to oneself and one’s possessions. Health-related information clearly falls under the right to control access to oneself. When release of information about oneself can lead to discrimination and other social losses, the right to privacy becomes even more important.

The following material addresses two potential challenges to confidentiality related to genetic counseling for complex psychiatric disorders.

Challenge 1: When an Adult Is Brought for Counseling by a Family Member

It is not uncommon for concerned family members to bring an affected adult sibling or child to a physician to address concerns about preventing pregnancy or about the management of an existing pregnancy. It is conceivable that genetic counselors may find themselves involved in the team providing care to such patients. The primary ethical issue concerns the relative roles that the affected individual and family members(s) should play in decisions about the client’s care.

All adult clients should be presumed capable of informed decision making. The counselor should arrange for an assessment of the client’s decision-making capacity, when it is in doubt. If the client is capable of making his or her own decisions, then the first decision to be made concerns whether the family member(s) who brought the client for care should continue to be involved in decisions about that care. The client is free to include or exclude them as he or she sees fit. If the client decides to exclude them, then the counselor and other team members should explain their obligation of confidentiality and emphasize that the client has not authorized access to his or her information by the family member(s). Serving as the client’s advocate in this respect may be necessary.

If the client is not capable of making his or her own decisions, the counselor should follow standards for surrogate decision making.

Challenge 2: Whether Others Have a Right to Know Confidential Information

Genetic information is not information just about one individual, but also about others with pertinent genetic relationships to that individual. Put colloquially, genetic data are family data. Information about a client’s susceptibility to a psychiatric disorder also is information about his or her relatives. This raises the question of whether these other individuals have the right to learn about this information. The current consensus in the bioethics literature is that they do not. However, as we learn more about common complex psychiatric disorders of all kinds, and as more effective treatments emerge for these disorders, the need for access to information by other individuals will become more compelling. This may create increased pressures on genetic counselors and other health-care professionals to allow access to information that currently is not permitted under the ethics of confidentiality.

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