P1: GVG Journal of Genetic Counseling [jgc]
ph131-jogc-375470
July 4, 2002
14:28
Style file version June 4th, 2002
C 2002) Journal of Genetic Counseling, Vol. 11, No. 4, August 2002 (°
Defining Moments: Coming Full Circle Caroline Lieber1,2
My “defining moment” has been more like a “defining interval,” developing over the last 3 years. After 18 years of working in a clinical setting, my focus has switched from educating patients to educating others about genetics. My experiences with a variety of educational programs have convinced me of the pressing need to broaden the genetic counselor’s role to accommodate widespread educational outreach. Additionally, two other themes have recurred consistently and satisfyingly. One theme is that outreach impacts the personal and professional growth of those involved in the shared experience. The other theme is that the lessons I learned so long ago in graduate school can be used in ways I had not anticipated. My encounters have been with three primary audiences: the schools (including Sarah Lawrence College), the community, and other health care professionals. One of the first lessons I learned is that there is a need to reach out to the school-age population to make them aware of the human genetics field. Primary school students who are exposed to genetic diversity may appreciate the differences between people and thus, may approach the world more broadmindedly. High school and college students, if introduced to genetics in a more clinically oriented way, may choose a career in genetics which will foster diversity and increase the numbers of genetic health professionals in the workforce. The need to attract qualified individuals from diverse backgrounds to the field is escalating as the frontiers of human genetics expand. A second realization has been of the need to educate the public at large. We need to disseminate our growing body of genetic knowledge to consumers while correcting misconceptions about what clinical genetics can achieve; we need to impart intimidating genetic information to consumers in a sensitive and comprehensive manner, giving them the tools to make appropriate health-related decisions for their lives. 1 Human
Genetics Program, Sarah Lawrence College, Bronxville, New York. should be directed to Caroline Lieber, Human Genetics Program, Sarah Lawrence College, 1 Mead Way, Bronxville, New York 10708; e-mail: [email protected].
2 Correspondence
315 C 2002 National Society of Genetic Counselors, Inc. 1059-7700/02/0800-0315/1 °
P1: GVG Journal of Genetic Counseling [jgc]
316
ph131-jogc-375470
July 4, 2002
14:28
Style file version June 4th, 2002
Lieber
Most recently I have gained a greater appreciation of the need to develop alliances with other health care professionals and to provide guidance in appropriately identifying patients in their clinical practices who are in need of genetic services. As genetic counselors, we need to assess the needs of each health care audience and develop a mutual agenda for presenting genetic information in a manner that is appropriate, palatable, and not overbearing. As each audience understands that we appreciate the issues that apply to their subspecialty, they in turn will appreciate the practical application of genetic information and be more willing to develop methods for identifying at-risk patients in the context of their discipline. Several projects have helped to solidify the necessity for this expanded definition of the genetic counselors’ duties. The first program has been an Educational Outreach Project (EOP) conducted by the students of the Human Genetics Program (HGP) at Sarah Lawrence College. Over the past few years, the students of the HGP have been assigned a first-year educational outreach project. Their chosen audiences include all of the audiences discussed above as well as some communitybased organizations. The goal of this project is to develop repeatable educational modules, introducing genetic concepts and attendant issues pertinent to a chosen audience. Many concepts have been addressed, from inheritance patterns to ethical dilemmas. The students’ job is to impart a sense of the “big picture,” discussing the concepts themselves as well as the impact they will have on the target audience with regard to self, family, and society. The EOP has profoundly affected the students as well as me. The learning from these projects is deep and diverse; the lessons learned often cannot be taught in a classroom. The students have been prompted to think creatively, broadening their personal and professional development. The defining moments are best summarized by comments from the students themselves. In her evaluation of a presentation to psychiatric crisis workers, one student commented: I thoroughly enjoyed doing this presentation and feel that I reached a population that was previously unknowledgeable about genetic disease . . . Furthermore I feel that those I was able to reach will now approach these cases from a different viewpoint with perhaps a renewed sensitivity and knowledge.
Another student said the following after her presentation to high school seniors in a private school: [The presentation] has pointed out how my own bias can creep into my explanation of genetic counseling . . . and how biases may be hidden in my explanations when counseling patients, even though I may not be aware of them.
The community education aspects of this program have taught all of us lessons. We appreciate that consumers need correct genetic information related to health concerns and reproduction, and such “hot” topics as cloning. The greater the appreciation of genetics and all of its implications, the more informed consumers will be about the profound decisions they will make in their lives. The greater the availability of accurate, up-to-date information, the higher the likelihood of
P1: GVG Journal of Genetic Counseling [jgc]
ph131-jogc-375470
July 4, 2002
14:28
Style file version June 4th, 2002
Defining Moments: Coming Full Circle
317
identifying previously unknown barriers to client care. Novel solutions can then be applied to break down these barriers. Ultimately, an increasing number of consumers in need of clinical genetics services will learn how to access them. The community outreach aspect of this program has also allowed the students to learn more about community-based programs and to find consumers of genetic information in seemingly unlikely places. One group of students recently spoke to a retirement community group. The participants had this to say: I wish I had known about this [genetic counseling] earlier. This was a worthwhile presentation—there should be more . . . seminars to educate the public and to make them aware of the resources that are available to them should they need them.
One unusual project was undertaken in collaboration with the Sarah Lawrence College Health Advocacy Program (HAP). The Bedford Hills maximum-security women’s correctional facility has a continuing education program that allows inmates to take classes for college credit. The inmate students requested a workshop on genetics and its applications to health issues. Two of the HGP students, working with a HAP graduate, agreed to make a presentation to their students. The inmate students were so stimulated by the presentation that they requested that the HGP sponsor an entire semester course. The two health programs collaborated and “Human Genetics and Health Issues” was taught by the 26 students of the HGP class of 2000, in the fall of 1999, to the students in the College Bound program at Bedford Hills. The College Bound students not only learned about issues in human genetics, but each student did a special project, mentored by the HGP students. Topics included ART, the uses of cord blood, and the possible uses of cloning. The HGP students learned firsthand how topics such as education, stigmatization, discrimination, and freedom affect the lives of real people in a way that reading materials could not convey. Educational outreach within the medical community has been particularly gratifying. I have recently had the privilege of working on a project called “Genetics and Primary Care: A Faculty Development Initiative” (HRSA Contract#240-980020). The goal of this project, as outlined in the program manual, is “to enhance the ability of faculty to incorporate the clinical application of genetic information into undergraduate and graduate primary care medical education.” Further, the scope of work is “to plan, implement and evaluate outcomes of training programs in genetics . . . [targeting] family medicine, general internal medicine, and general pediatrics faculty.” During a 9-month period, our 5-person team, consisting of the three primary care physicians, a medical geneticist, and myself, designed our faculty development workshop entitled “Genetics in Primary Care: Think Genetics, Teach Genetics.” We presented our half-day program in March 2001. The office of Continuing Medical Education at the parent institution shared that this was the fastest-subscribed program they had ever sponsored—75 people attended the workshop, and the evaluations were all extremely positive.
P1: GVG Journal of Genetic Counseling [jgc]
318
ph131-jogc-375470
July 4, 2002
14:28
Style file version June 4th, 2002
Lieber
The success of the program was deeply rewarding, but the defining moment for me came from a different direction entirely. At the final project meeting in April 2001, I realized how much the process of this project had simulated a genetic counseling session. Early on the genetics personnel recognized that we needed to contract with the “clients,” to determine their needs, their interests, and their learning styles. We had to learn how to think like a primary care physician, and use language they were at ease with in order to present the information effectively. We had to build a sense of trust, so that the PCPs and geneticists participated in a two-way communication, each partner cooperatively learning from the other. At the end of the project, the physicians seemed much more willing to listen to the genetics faculty because they sensed that we better understood their language and what was important to them. I recognized then that I had come full circle. I had thought I was doing something very different, but it became clear to me that I was not. The communication skills I had learned so long ago in graduate school have universal applicability, and can be utilized with many different “clients,” in many different venues. The genetic counselor’s world can and should expand beyond the hospital setting; instead of having them come to us, we should reach out to people, using our knowledge and expertise to allow them to understand and appreciate what we have to offer.
ph131-jogc-375470
July 4, 2002
14:28
Style file version June 4th, 2002
C 2002) Journal of Genetic Counseling, Vol. 11, No. 4, August 2002 (°
Defining Moments: Coming Full Circle Caroline Lieber1,2
My “defining moment” has been more like a “defining interval,” developing over the last 3 years. After 18 years of working in a clinical setting, my focus has switched from educating patients to educating others about genetics. My experiences with a variety of educational programs have convinced me of the pressing need to broaden the genetic counselor’s role to accommodate widespread educational outreach. Additionally, two other themes have recurred consistently and satisfyingly. One theme is that outreach impacts the personal and professional growth of those involved in the shared experience. The other theme is that the lessons I learned so long ago in graduate school can be used in ways I had not anticipated. My encounters have been with three primary audiences: the schools (including Sarah Lawrence College), the community, and other health care professionals. One of the first lessons I learned is that there is a need to reach out to the school-age population to make them aware of the human genetics field. Primary school students who are exposed to genetic diversity may appreciate the differences between people and thus, may approach the world more broadmindedly. High school and college students, if introduced to genetics in a more clinically oriented way, may choose a career in genetics which will foster diversity and increase the numbers of genetic health professionals in the workforce. The need to attract qualified individuals from diverse backgrounds to the field is escalating as the frontiers of human genetics expand. A second realization has been of the need to educate the public at large. We need to disseminate our growing body of genetic knowledge to consumers while correcting misconceptions about what clinical genetics can achieve; we need to impart intimidating genetic information to consumers in a sensitive and comprehensive manner, giving them the tools to make appropriate health-related decisions for their lives. 1 Human
Genetics Program, Sarah Lawrence College, Bronxville, New York. should be directed to Caroline Lieber, Human Genetics Program, Sarah Lawrence College, 1 Mead Way, Bronxville, New York 10708; e-mail: [email protected].
2 Correspondence
315 C 2002 National Society of Genetic Counselors, Inc. 1059-7700/02/0800-0315/1 °
P1: GVG Journal of Genetic Counseling [jgc]
316
ph131-jogc-375470
July 4, 2002
14:28
Style file version June 4th, 2002
Lieber
Most recently I have gained a greater appreciation of the need to develop alliances with other health care professionals and to provide guidance in appropriately identifying patients in their clinical practices who are in need of genetic services. As genetic counselors, we need to assess the needs of each health care audience and develop a mutual agenda for presenting genetic information in a manner that is appropriate, palatable, and not overbearing. As each audience understands that we appreciate the issues that apply to their subspecialty, they in turn will appreciate the practical application of genetic information and be more willing to develop methods for identifying at-risk patients in the context of their discipline. Several projects have helped to solidify the necessity for this expanded definition of the genetic counselors’ duties. The first program has been an Educational Outreach Project (EOP) conducted by the students of the Human Genetics Program (HGP) at Sarah Lawrence College. Over the past few years, the students of the HGP have been assigned a first-year educational outreach project. Their chosen audiences include all of the audiences discussed above as well as some communitybased organizations. The goal of this project is to develop repeatable educational modules, introducing genetic concepts and attendant issues pertinent to a chosen audience. Many concepts have been addressed, from inheritance patterns to ethical dilemmas. The students’ job is to impart a sense of the “big picture,” discussing the concepts themselves as well as the impact they will have on the target audience with regard to self, family, and society. The EOP has profoundly affected the students as well as me. The learning from these projects is deep and diverse; the lessons learned often cannot be taught in a classroom. The students have been prompted to think creatively, broadening their personal and professional development. The defining moments are best summarized by comments from the students themselves. In her evaluation of a presentation to psychiatric crisis workers, one student commented: I thoroughly enjoyed doing this presentation and feel that I reached a population that was previously unknowledgeable about genetic disease . . . Furthermore I feel that those I was able to reach will now approach these cases from a different viewpoint with perhaps a renewed sensitivity and knowledge.
Another student said the following after her presentation to high school seniors in a private school: [The presentation] has pointed out how my own bias can creep into my explanation of genetic counseling . . . and how biases may be hidden in my explanations when counseling patients, even though I may not be aware of them.
The community education aspects of this program have taught all of us lessons. We appreciate that consumers need correct genetic information related to health concerns and reproduction, and such “hot” topics as cloning. The greater the appreciation of genetics and all of its implications, the more informed consumers will be about the profound decisions they will make in their lives. The greater the availability of accurate, up-to-date information, the higher the likelihood of
P1: GVG Journal of Genetic Counseling [jgc]
ph131-jogc-375470
July 4, 2002
14:28
Style file version June 4th, 2002
Defining Moments: Coming Full Circle
317
identifying previously unknown barriers to client care. Novel solutions can then be applied to break down these barriers. Ultimately, an increasing number of consumers in need of clinical genetics services will learn how to access them. The community outreach aspect of this program has also allowed the students to learn more about community-based programs and to find consumers of genetic information in seemingly unlikely places. One group of students recently spoke to a retirement community group. The participants had this to say: I wish I had known about this [genetic counseling] earlier. This was a worthwhile presentation—there should be more . . . seminars to educate the public and to make them aware of the resources that are available to them should they need them.
One unusual project was undertaken in collaboration with the Sarah Lawrence College Health Advocacy Program (HAP). The Bedford Hills maximum-security women’s correctional facility has a continuing education program that allows inmates to take classes for college credit. The inmate students requested a workshop on genetics and its applications to health issues. Two of the HGP students, working with a HAP graduate, agreed to make a presentation to their students. The inmate students were so stimulated by the presentation that they requested that the HGP sponsor an entire semester course. The two health programs collaborated and “Human Genetics and Health Issues” was taught by the 26 students of the HGP class of 2000, in the fall of 1999, to the students in the College Bound program at Bedford Hills. The College Bound students not only learned about issues in human genetics, but each student did a special project, mentored by the HGP students. Topics included ART, the uses of cord blood, and the possible uses of cloning. The HGP students learned firsthand how topics such as education, stigmatization, discrimination, and freedom affect the lives of real people in a way that reading materials could not convey. Educational outreach within the medical community has been particularly gratifying. I have recently had the privilege of working on a project called “Genetics and Primary Care: A Faculty Development Initiative” (HRSA Contract#240-980020). The goal of this project, as outlined in the program manual, is “to enhance the ability of faculty to incorporate the clinical application of genetic information into undergraduate and graduate primary care medical education.” Further, the scope of work is “to plan, implement and evaluate outcomes of training programs in genetics . . . [targeting] family medicine, general internal medicine, and general pediatrics faculty.” During a 9-month period, our 5-person team, consisting of the three primary care physicians, a medical geneticist, and myself, designed our faculty development workshop entitled “Genetics in Primary Care: Think Genetics, Teach Genetics.” We presented our half-day program in March 2001. The office of Continuing Medical Education at the parent institution shared that this was the fastest-subscribed program they had ever sponsored—75 people attended the workshop, and the evaluations were all extremely positive.
P1: GVG Journal of Genetic Counseling [jgc]
318
ph131-jogc-375470
July 4, 2002
14:28
Style file version June 4th, 2002
Lieber
The success of the program was deeply rewarding, but the defining moment for me came from a different direction entirely. At the final project meeting in April 2001, I realized how much the process of this project had simulated a genetic counseling session. Early on the genetics personnel recognized that we needed to contract with the “clients,” to determine their needs, their interests, and their learning styles. We had to learn how to think like a primary care physician, and use language they were at ease with in order to present the information effectively. We had to build a sense of trust, so that the PCPs and geneticists participated in a two-way communication, each partner cooperatively learning from the other. At the end of the project, the physicians seemed much more willing to listen to the genetics faculty because they sensed that we better understood their language and what was important to them. I recognized then that I had come full circle. I had thought I was doing something very different, but it became clear to me that I was not. The communication skills I had learned so long ago in graduate school have universal applicability, and can be utilized with many different “clients,” in many different venues. The genetic counselor’s world can and should expand beyond the hospital setting; instead of having them come to us, we should reach out to people, using our knowledge and expertise to allow them to understand and appreciate what we have to offer.
