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Debate on genetic counseling, scholars war over Israel's early years..
"Where Human Life Happens," our June issue cover story on Dr. Glenn McGee of Penn's Center for Bioethics, drew the most mail over the summer. Several genetic counselors wrote to protest comments by Dr. McGee concerning their profession, while other health professionals praised the article for "consciousness raising" on the ethical isues surrounding genetic tests. A selection of letters follows. -- Ed.
"SIMPLISTIC VIEW" OF
GENETIC COUNSELING IS DISTURBING
I was disturbed by Dr. Glenn McGee's simplistic view of genetic counseling ["Where Human Life Happens," June]. To predict that genetic counselors "will soon be replaced by CD-ROMs with risk statistics and bland information about diseases" is akin to stating that bioethicists will soon be replaced by textbook algorithms: If X situation arises, skip to point D .... For genetic counselors, the complexity of the profession's work occurs after the risk statistics, options and information are given. Helping individuals, couples, and families with decisions about their genetic options and future is precisely what trained clinical genetic counselors confront daily.
I have heard hundreds of stories about genetic counselors who have held the hands of women during the deliveries of offspring with conditions incompatible with life. They have taken locks of hair from those babies to enable couples to have something tangible from a life-altering, excruciating experience; they have taken courses on how to photograph a stillborn so it is not a photo ready for a medical text, but rather a memento of a real couple's real child. I have listened to genetic counselors after they have helped a multi-generational family struggle through decisions about presymptomatic testing for one of many childhood or adult-onset disorders, such as cancer family syndromes, Huntington's disease, cystic fibrosis, then give the family members their home phone numbers, offering to clarify information often lost to the emotions of a highly charged session. What CD-ROM will do this?
Contrary to McGee's view, genetic counselors do not present information and walk away from their clients' decision. Rather, they, as in most counseling professions, help clients address all options in terms of their clients' culture, beliefs and values. Dr. McGee suggests the physician, clergy, or other professionals could assume the genetic counseling role, providing directive answers to "What would you (should I) do?" This approach is viewed as paternalistic and inappropriate precisely because we all live with and desire respect for our different beliefs, values, and life experiences. Bioethics 101, I would hope, taught Dr. McGee that professional value.
COMMON UNDERSTANDING OF
ETHICAL ISSUES NEEDED
I applaud the article by Phil Berardelli, "Where Human Life Happens," as well as the work that Dr. McGee and the Center for Bioethics are doing. Having worked in the field of nursing and midwifery for more than 30 years and the field of bioethics with emphasis on ethics in nursing, medicine, and other health professions with my husband, Dr. Henry O. Thompson, since 1993, I am pleased with several aspects of this article.
I strongly endorse Dr. McGee's "call to action" in genetic counseling, especially among those who have the most direct contact with pregnant women and their partners/ families and to whom they traditionally turn for counsel and support -- clergy, nurses/midwives, primary care physicians, etc. While formally educated genetic counselors are important to this process, they cannot and should not be relied upon solely to work with pregnant couples on genetic issues.
I further support Dr. McGee's notion that genetic science has advanced much more quickly than the ability of social institutions [and most human beings] to deal with the impact of that science. It is imperative that academics, clinicians, insurers, lawyers, and the public at large agree to get together and work toward common understanding of the ethical issues that face ordinary people in our daily lives.
Finally, I agree with Dr. McGee that ethical decision-making offers much more than the traditional doctor-patient relationship in facing these complex issues of genetics. We must be concerned about truthtelling, confidentiality, autonomy, and informed participation in health care decisions, beneficence, and human dignity when approaching both what is known and unknown about genetics or pregnancy or whatever health condition requires the interaction of person with health professional.
I sincerely hope that this article will stimulate the needed open discussion and debate surrounding ethics and genetics. Thank you for raising our consciousness!
Dr. Joyce E. Thompson, Faculty
Director, Graduate Program
School of Nursing
NURSES CRITICAL TO
Congratulations on your article focusing on genetic science and the work of Dr. Glenn McGee. Thank you for acknowledging the importance of a multidisciplinary approach to genetic and family planning issues. I'd like to underscore the importance of nurses to this process. Today, nurses not only need to feel competent about the science of genetics, but about how genetics influences clinical decisionmaking about the promotion of health, as well as the prevention and treatment of disease. Tomorrow, genetics will be woven into the routine discourse of every minister, general internist, and nurse. Our job is to help prepare them.
Janet A. Deatrick, Faculty
Nursing of Children
School of Nursing
EDUCATION IS ESSENTIAL
I thoroughly enjoyed reading Phil Berardelli's article "Where Human Life Happens" in the June 1997 Gazette. Glenn McGee is a fellow bioethicist and personal friend, and, in general, I really think Mr. Berardelli "got it right" with his description of Glenn and his hectic life. Education of the public about the ethics and values issues of the new biology is absolutely essential if our reproductive choices are to be grounded upon enlightened discourse rather than force or fear.
Penn's Center for Bioethics has quickly established itself as one of the major research centers in the field. You have done your readers a great service by highlighting the activities of one of its superstars.
Dr. James J. McCartney
Chair, Department of Philosophy
Glenn McGee Responds:
It has been gratifying to me to hear from so many of my colleagues in ethics and genetics about the profile by Phil Beradelli in the Gazette, both here and by e-mail and phone. Many in the genetic counseling community have expressed the concern to me and others that genetic counseling has not been given its due in public discussions. I agree. We have to insist that genetic testing includes genetic counseling, and that genetic counseling means more than a pamphlet or a CD-ROM. However, we know that the vast majority of genetic tests are not accompanied by genetic counseling, and that the general drift of things is toward counseling by pamphlets and CD-ROMs, primarily because of cost constraints. I want to reiterate here that it is my position that genetic counseling is difficult stuff, and that genetic counselors bring the ideal set of qualifications for that stuff. My fear is that not all testing is ideal, and if we don't attach some importance to training ministers, physicians, staff, nurses, and others in genetics, many who are tested won't be counseled at all. It is for this reason that I'm so pleased with the arguments of McCartney, Thompson, and Deatrick. We have to begin to train a variety of professionals to become conversant in basic genetics issues, and genetic counselors will help us along that road.
The article "Camp David on the Schuylkill" [June], while containing Dr. Elazar's criticisms of my paper on "The Political Culture of the Ben-Gurionist Republic," omitted my response to Elazar's remarks: I found his comments paternalistic (calling me a "nice guy"), containing the only ad hominem assault in the meeting (accusing me of using a "sinister tone"), and altogether useless and misleading.
Elazar's contention that I offered an American-style liberal model for Israel is patently absurd. I didn't do that because it was not my task to offer prescriptions, nor do I believe that such a model has ever been appropriate for Israel. Elazar's objection to the use of the term "militarism" to describe Israel's early era ignored the paper's 10-page analysis of that issue and the entire recent literature on that matter. While Elazar is right that the IDF was a citizen army, this point has nothing to do with the militarization of Israel's politics, society, and especially foreign policy in the formative era, a well-documented phenomenon.
DR. Ilan Peleg
Charles A. Dana Professor
of Government and Law
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Copyright 1997 The Pennsylvania Gazette Last modified 9/25/97