P1: GVM Journal of Genetic Counseling [jgc]
ph114-jogc-371110
March 22, 2002
16:50
Style file version Nov. 19th, 1999
C 2002) Journal of Genetic Counseling, Vol. 11, No. 3, June 2002 (°
Commentary on Genetic Counseling—A Profession in Search of Itself Patricia McCarthy Veach,1,4 Dianne M. Bartels,2 and Bonnie S. LeRoy3
As part of a project to develop educational materials for primary care providers, we conducted a two-phased study investigating ethical and professional challenges posed by patients with genetic concerns. This research, published in The Journal of Genetic Counseling, consists of a qualitative phase (McCarthy Veach et al., 2001) that identified 16 major ethical/professional domains, and a quantitative phase (Bower et al., 2002) that validated these domains and identified genetic counselors’ strategies for addressing particularly challenging situations. In these publications we remained close to the data when drawing conclusions from our findings. However, we believe that our genetic counselor participants have a bigger story to tell about how they view their role in ethical and professional dilemmas, and about the relevance of the ethical principles currently espoused by the National Society of Genetic Counselors’ for real world experiences. Our findings reflect several genetic counselor strengths. They are keenly attuned to complex ethical and professional challenges, and they have their clients’ best interests as a foremost priority when addressing these situations. Genetic counselors respond in versatile ways to these challenges, drawing from a variety of strategies (e.g., further discussion with patients, consultation with colleagues, referral), and they often use more than one strategy. Accounts of their personal struggles with ethically challenging situations demonstrate genetic counselors’ capacity for self-reflection and self-scrutiny and indicate an almost painful awareness that value-neutral, nondirective counseling is not appropriate for many of 1 Department
of Educational Psychology, University of Minnesota, Minneapolis, Minnesota. for Bioethics, University of Minnesota, Minneapolis, Minnesota. 3 Department of Genetics, Cell Biology, and Development, Institute of Human Genetics, University of Minnesota, Minneapolis, Minnesota. 4 Correspondence should be directed to Dr Patricia McCarthy Veach, Department of Educational Psychology, University of Minnesota, 139 Burton Hall, 178 Pillsbury Drive, S.E., Minneapolis, Minnesota 55455; e-mail: [email protected]. 2 Center
187 C 2002 National Society of Genetic Counselors, Inc. 1059-7700/02/0600-0187/1 °
P1: GVM Journal of Genetic Counseling [jgc]
188
ph114-jogc-371110
March 22, 2002
16:50
Style file version Nov. 19th, 1999
McCarthy Veach, Bartels, and LeRoy
these situations. Indeed, one of the four most common responses given as a strategy for addressing ethical dilemmas in the Bower et al. (2002) study was I don’t know. Genetic counselors often are uncertain about how to respond, and regardless of whether they try a nondirective or a more directive approach, they question the efficacy of their strategies. This seems to be the case whether they are novices or seasoned practitioners. Why are genetic counselors so uncertain, and why doesn’t this uncertainty diminish with experience? One reason may be the lack of an empirically established model that articulates the process of genetic counseling. Another reason is that the current theory of genetic counseling is a hybrid of medical, educational, and mental health models. We believe that genetic counseling is not a hybrid. Rather, it is a unique service that deserves its own model, methods, and identified outcomes. Consider, for instance, our finding that one major type of ethical challenge involves parental requests for presymptomatic testing of minors. Given that the profession has established guidelines limiting such testing, why would this be a prevalent issue? We believe it is because nondirectiveness, adopted from mental health counseling, has not been sufficiently adapted for genetic counseling. Genetic counselors, for the most part, misinterpret nondirectiveness to mean that they should help clients do whatever clients want. Overreliance on nondirectiveness frequently puts genetic counselors in a position where they disagree completely with the client but tell themselves, “That’s ok, because I really cannot understand everything the client is experiencing.” In extreme situations, this leads to clients making choices that the genetic counselor considers to be morally reprehensible (e.g., termination of a twin pregnancy after years of infertility treatment because the couple only wants one child, or realizing that a couple’s medical reason for seeking an amnio is a thinly veiled disguise for sex selection, but not confronting them on this). It is past time for the profession to grow beyond the traditional view of nondirectiveness, to stop using it as an excuse for saying nothing and having no professional opinion. “It’s the client’s choice—my values play no role” is not an appropriate attitude for any profession, let alone one that is so complex. In some respects, Rogerian nondirectiveness is the profession’s greatest asset and its greatest liability. Nondirectiveness has been a significant factor in preserving client autonomy. At the same time, however, it has failed to provide a framework for determining when and how to take a more proactive stance with clients. Completely value-neutral nondirective counseling is neither desirable nor possible. All helpers hold values about what is right and wrong, and they convey these values—no matter now subtly. Carl Rogers recognized this when he changed the name of his theory from Nondirective Counseling to PersonCentered Counseling (Corey, 1996). Genetic counselors need guidance and support from the profession regarding how to have a conversation with clients in
P1: GVM Journal of Genetic Counseling [jgc]
ph114-jogc-371110
March 22, 2002
Genetic Counseling—A Profession in Search of Itself
16:50
Style file version Nov. 19th, 1999
189
which the counselors’ values can be appropriately shared and incorporated into a session. The big picture we gleaned from our research tells us that the profession also needs to set more precise practice standards, a process which would be aided by empirical investigations of actual genetic counseling sessions to determine effective genetic counseling process and outcomes. Until this happens, genetic counselors will continue to be reluctant to express their opinions or to give advice as professionals, despite the wealth of information they have about previous clients’ experiences and what those clients typically have done. They will continue to confuse advice with coercion and be reluctant to say anything that might challenge their clients. In the meantime, our research and clinical experience suggest five recommendations: First, practice guidelines for informing patients about genetic counseling prior to their session should be established. These might include written information sheets and/or informed consent documents for the genetic counseling session, similar to those used in mental health counseling. These types of documents would acknowledge that genetic counseling can be a psychosocially invasive procedure. Written materials could describe the risks and benefits of genetic counseling; they also would allow genetic counselors to specify the limits to confidentiality a priori rather than post hoc, as they appear to be addressed currently. For example, genetic counselors could reach agreement up front about who does and does not have access to confidential information, and they could present the possibility of unanticipated testing results and how those would be handled. Second, genetic counselors should relinquish the questionable belief that sharing their professional opinion or disclosing what other clients in similar situations have done might coerce many clients into a particular decision. By continuing to hide behind the illusion of genetic counselors as neutral data gatherers and information providers, they run the risk of objectifying clients to the point of depersonalizing them, and of distancing themselves in order to avoid being too influential. In discussing options with clients, genetic counselors could give their opinions, where appropriate, state the values that underlie their opinions, and explore their relevance for a particular client. To illustrate, consider a common ethical situation from our research involving prenatal testing for sex selection in the absence of a sex-linked disease. This is a practice which many genetic counselors find troublesome. We can envision a situation where the genetic counselor would share her or his opinion by saying, “I understand that you are saying you plan to continue this pregnancy only if the baby is a boy. I’m sure you have reasons for this decision, and I understand that some of these may be cultural. However, I (We, if there is a policy) believe that this is not an appropriate use of a medical service. I cannot participate in providing this service for you. It goes against my personal values because I believe that gender is not a medical indication for this procedure.
P1: GVM Journal of Genetic Counseling [jgc]
190
ph114-jogc-371110
March 22, 2002
16:50
Style file version Nov. 19th, 1999
McCarthy Veach, Bartels, and LeRoy
I would like to discuss this position with you further so that we can better understand each other.” Third, the profession must promote evaluations of the process and outcome of genetic counseling. If genetic counselors had more follow-up data about client decisions, they would be able to give clients empirically supported advice. Fourth, peer supervision is a necessity. Practice in the absence of consultation and feedback can lead to errors in judgment. Genetic counselors would benefit from ongoing case review for assistance with challenging ethical and professional situations. Finally, the profession needs to develop clear positions on the specific ethical situations that are most problematic for genetic counselors. In particular, it needs to establish practice standards regarding sex selection for nonmedical purposes and for handling nonpaternity situations. In summary, we emphasize these points: • Value-neutral nondirectiveness is not sufficient as a guiding principle for genetic counseling services. • Clients are more resilient than one might think. Most can and will walk away from unwanted information and advice. Additionally, most clients are able to incorporate professional advice into their decision making. It is, however, most important that the information and advice are accurate and pertinent. • Genetic counselors have a deep experiential foundation on which to base their professional opinions and advice. They need to formalize this experience in published research. • Although genetic counselor clinical experience is a rich source of qualitative data concerning genetic counseling process and outcome, in order to provide a solid basis for genetic counselor interventions, it must be validated by quantitative research. • The profession needs to take a stance on troublesome ethical issues such as sex selection and nonpaternity. The Code of Ethics needs to be expanded to meet ongoing challenges to the profession. • The basic principles on which genetic counseling is based may have been quite appropriate at a time when knowledge and technologies limited the discussion about client options. As genetic knowledge and technologies expand, clients are faced with increasingly complex decisions about whether and how to proceed. Expanding technological options involve greater uncertainties, risks, and benefits. Genetic counselors will do their clients a disservice if they limit their interventions to simply providing information without also engaging in a challenging conversation, when appropriate. • Genetic counseling is a unique activity that warrants its own model and methods. It is time for the profession to find itself by articulating the genetic counseling model of genetic counseling.
P1: GVM Journal of Genetic Counseling [jgc]
ph114-jogc-371110
March 22, 2002
Genetic Counseling—A Profession in Search of Itself
16:50
Style file version Nov. 19th, 1999
191
In conclusion, genetic counselors have much to offer clients and other health professionals with respect to the resolution of ethical challenges. They need to learn how to better share their wealth of experience with clients and other health care professionals. REFERENCES Bower MA, McCarthy Veach P, Bartels DM, LeRoy BS (2002) A survey of genetic counselors’ strategies for addressing ethical and professional challenges in practice. J Genet Couns 11:163– 186. Corey G (1996) Theory and Practice of Counseling and Psychotherapy (5th ed). Pacific Grove, CA: Brooks/Cole, pp 198–199. McCarthy Veach P, Bartels DM, LeRoy BS (2001) Ethical and professional challenges posed by patients with genetic concerns: A report of focus group discussions with genetic counselors, physicians, and nurses. J Genet Couns 10:97–119.
ph114-jogc-371110
March 22, 2002
16:50
Style file version Nov. 19th, 1999
C 2002) Journal of Genetic Counseling, Vol. 11, No. 3, June 2002 (°
Commentary on Genetic Counseling—A Profession in Search of Itself Patricia McCarthy Veach,1,4 Dianne M. Bartels,2 and Bonnie S. LeRoy3
As part of a project to develop educational materials for primary care providers, we conducted a two-phased study investigating ethical and professional challenges posed by patients with genetic concerns. This research, published in The Journal of Genetic Counseling, consists of a qualitative phase (McCarthy Veach et al., 2001) that identified 16 major ethical/professional domains, and a quantitative phase (Bower et al., 2002) that validated these domains and identified genetic counselors’ strategies for addressing particularly challenging situations. In these publications we remained close to the data when drawing conclusions from our findings. However, we believe that our genetic counselor participants have a bigger story to tell about how they view their role in ethical and professional dilemmas, and about the relevance of the ethical principles currently espoused by the National Society of Genetic Counselors’ for real world experiences. Our findings reflect several genetic counselor strengths. They are keenly attuned to complex ethical and professional challenges, and they have their clients’ best interests as a foremost priority when addressing these situations. Genetic counselors respond in versatile ways to these challenges, drawing from a variety of strategies (e.g., further discussion with patients, consultation with colleagues, referral), and they often use more than one strategy. Accounts of their personal struggles with ethically challenging situations demonstrate genetic counselors’ capacity for self-reflection and self-scrutiny and indicate an almost painful awareness that value-neutral, nondirective counseling is not appropriate for many of 1 Department
of Educational Psychology, University of Minnesota, Minneapolis, Minnesota. for Bioethics, University of Minnesota, Minneapolis, Minnesota. 3 Department of Genetics, Cell Biology, and Development, Institute of Human Genetics, University of Minnesota, Minneapolis, Minnesota. 4 Correspondence should be directed to Dr Patricia McCarthy Veach, Department of Educational Psychology, University of Minnesota, 139 Burton Hall, 178 Pillsbury Drive, S.E., Minneapolis, Minnesota 55455; e-mail: [email protected]. 2 Center
187 C 2002 National Society of Genetic Counselors, Inc. 1059-7700/02/0600-0187/1 °
P1: GVM Journal of Genetic Counseling [jgc]
188
ph114-jogc-371110
March 22, 2002
16:50
Style file version Nov. 19th, 1999
McCarthy Veach, Bartels, and LeRoy
these situations. Indeed, one of the four most common responses given as a strategy for addressing ethical dilemmas in the Bower et al. (2002) study was I don’t know. Genetic counselors often are uncertain about how to respond, and regardless of whether they try a nondirective or a more directive approach, they question the efficacy of their strategies. This seems to be the case whether they are novices or seasoned practitioners. Why are genetic counselors so uncertain, and why doesn’t this uncertainty diminish with experience? One reason may be the lack of an empirically established model that articulates the process of genetic counseling. Another reason is that the current theory of genetic counseling is a hybrid of medical, educational, and mental health models. We believe that genetic counseling is not a hybrid. Rather, it is a unique service that deserves its own model, methods, and identified outcomes. Consider, for instance, our finding that one major type of ethical challenge involves parental requests for presymptomatic testing of minors. Given that the profession has established guidelines limiting such testing, why would this be a prevalent issue? We believe it is because nondirectiveness, adopted from mental health counseling, has not been sufficiently adapted for genetic counseling. Genetic counselors, for the most part, misinterpret nondirectiveness to mean that they should help clients do whatever clients want. Overreliance on nondirectiveness frequently puts genetic counselors in a position where they disagree completely with the client but tell themselves, “That’s ok, because I really cannot understand everything the client is experiencing.” In extreme situations, this leads to clients making choices that the genetic counselor considers to be morally reprehensible (e.g., termination of a twin pregnancy after years of infertility treatment because the couple only wants one child, or realizing that a couple’s medical reason for seeking an amnio is a thinly veiled disguise for sex selection, but not confronting them on this). It is past time for the profession to grow beyond the traditional view of nondirectiveness, to stop using it as an excuse for saying nothing and having no professional opinion. “It’s the client’s choice—my values play no role” is not an appropriate attitude for any profession, let alone one that is so complex. In some respects, Rogerian nondirectiveness is the profession’s greatest asset and its greatest liability. Nondirectiveness has been a significant factor in preserving client autonomy. At the same time, however, it has failed to provide a framework for determining when and how to take a more proactive stance with clients. Completely value-neutral nondirective counseling is neither desirable nor possible. All helpers hold values about what is right and wrong, and they convey these values—no matter now subtly. Carl Rogers recognized this when he changed the name of his theory from Nondirective Counseling to PersonCentered Counseling (Corey, 1996). Genetic counselors need guidance and support from the profession regarding how to have a conversation with clients in
P1: GVM Journal of Genetic Counseling [jgc]
ph114-jogc-371110
March 22, 2002
Genetic Counseling—A Profession in Search of Itself
16:50
Style file version Nov. 19th, 1999
189
which the counselors’ values can be appropriately shared and incorporated into a session. The big picture we gleaned from our research tells us that the profession also needs to set more precise practice standards, a process which would be aided by empirical investigations of actual genetic counseling sessions to determine effective genetic counseling process and outcomes. Until this happens, genetic counselors will continue to be reluctant to express their opinions or to give advice as professionals, despite the wealth of information they have about previous clients’ experiences and what those clients typically have done. They will continue to confuse advice with coercion and be reluctant to say anything that might challenge their clients. In the meantime, our research and clinical experience suggest five recommendations: First, practice guidelines for informing patients about genetic counseling prior to their session should be established. These might include written information sheets and/or informed consent documents for the genetic counseling session, similar to those used in mental health counseling. These types of documents would acknowledge that genetic counseling can be a psychosocially invasive procedure. Written materials could describe the risks and benefits of genetic counseling; they also would allow genetic counselors to specify the limits to confidentiality a priori rather than post hoc, as they appear to be addressed currently. For example, genetic counselors could reach agreement up front about who does and does not have access to confidential information, and they could present the possibility of unanticipated testing results and how those would be handled. Second, genetic counselors should relinquish the questionable belief that sharing their professional opinion or disclosing what other clients in similar situations have done might coerce many clients into a particular decision. By continuing to hide behind the illusion of genetic counselors as neutral data gatherers and information providers, they run the risk of objectifying clients to the point of depersonalizing them, and of distancing themselves in order to avoid being too influential. In discussing options with clients, genetic counselors could give their opinions, where appropriate, state the values that underlie their opinions, and explore their relevance for a particular client. To illustrate, consider a common ethical situation from our research involving prenatal testing for sex selection in the absence of a sex-linked disease. This is a practice which many genetic counselors find troublesome. We can envision a situation where the genetic counselor would share her or his opinion by saying, “I understand that you are saying you plan to continue this pregnancy only if the baby is a boy. I’m sure you have reasons for this decision, and I understand that some of these may be cultural. However, I (We, if there is a policy) believe that this is not an appropriate use of a medical service. I cannot participate in providing this service for you. It goes against my personal values because I believe that gender is not a medical indication for this procedure.
P1: GVM Journal of Genetic Counseling [jgc]
190
ph114-jogc-371110
March 22, 2002
16:50
Style file version Nov. 19th, 1999
McCarthy Veach, Bartels, and LeRoy
I would like to discuss this position with you further so that we can better understand each other.” Third, the profession must promote evaluations of the process and outcome of genetic counseling. If genetic counselors had more follow-up data about client decisions, they would be able to give clients empirically supported advice. Fourth, peer supervision is a necessity. Practice in the absence of consultation and feedback can lead to errors in judgment. Genetic counselors would benefit from ongoing case review for assistance with challenging ethical and professional situations. Finally, the profession needs to develop clear positions on the specific ethical situations that are most problematic for genetic counselors. In particular, it needs to establish practice standards regarding sex selection for nonmedical purposes and for handling nonpaternity situations. In summary, we emphasize these points: • Value-neutral nondirectiveness is not sufficient as a guiding principle for genetic counseling services. • Clients are more resilient than one might think. Most can and will walk away from unwanted information and advice. Additionally, most clients are able to incorporate professional advice into their decision making. It is, however, most important that the information and advice are accurate and pertinent. • Genetic counselors have a deep experiential foundation on which to base their professional opinions and advice. They need to formalize this experience in published research. • Although genetic counselor clinical experience is a rich source of qualitative data concerning genetic counseling process and outcome, in order to provide a solid basis for genetic counselor interventions, it must be validated by quantitative research. • The profession needs to take a stance on troublesome ethical issues such as sex selection and nonpaternity. The Code of Ethics needs to be expanded to meet ongoing challenges to the profession. • The basic principles on which genetic counseling is based may have been quite appropriate at a time when knowledge and technologies limited the discussion about client options. As genetic knowledge and technologies expand, clients are faced with increasingly complex decisions about whether and how to proceed. Expanding technological options involve greater uncertainties, risks, and benefits. Genetic counselors will do their clients a disservice if they limit their interventions to simply providing information without also engaging in a challenging conversation, when appropriate. • Genetic counseling is a unique activity that warrants its own model and methods. It is time for the profession to find itself by articulating the genetic counseling model of genetic counseling.
P1: GVM Journal of Genetic Counseling [jgc]
ph114-jogc-371110
March 22, 2002
Genetic Counseling—A Profession in Search of Itself
16:50
Style file version Nov. 19th, 1999
191
In conclusion, genetic counselors have much to offer clients and other health professionals with respect to the resolution of ethical challenges. They need to learn how to better share their wealth of experience with clients and other health care professionals. REFERENCES Bower MA, McCarthy Veach P, Bartels DM, LeRoy BS (2002) A survey of genetic counselors’ strategies for addressing ethical and professional challenges in practice. J Genet Couns 11:163– 186. Corey G (1996) Theory and Practice of Counseling and Psychotherapy (5th ed). Pacific Grove, CA: Brooks/Cole, pp 198–199. McCarthy Veach P, Bartels DM, LeRoy BS (2001) Ethical and professional challenges posed by patients with genetic concerns: A report of focus group discussions with genetic counselors, physicians, and nurses. J Genet Couns 10:97–119.
