AMERICAN JOURNAL OF
November 1976 Volume 66, Number 11
EDITOR Alfred Yankauer, MD, MPH
EDITORIAL BOARD Michel A. Ibrahim, MD, PhD (1977) Chairman Faye G. Abdellah, PhD (1977) Rashi Fein, PhD (1978) Ruth B. Galanter, MCP (1977) H. Jack Geiger, MD, MSciHyg (1978) George E. Hardy, Jr., MD, MPH (1978) C. C. Johnson, Jr., MSCE (1977) M. Allen Pond, MPH (1976) Pauline 0. Roberts, MD, MPH (1976) Ruth Roemer, JD (1978) Sam Shapiro (1976) Robert Sigmond (1976) Jeannette J. Simmons, MPH, DSc (1978) David H. Wegman, MD, MSOH (1976) Robert J. Weiss, MD (1977)
STAFF William H. McBeath, MD, MPH Executive DirectorlManaging Editor Allen J. Seeber Director of Publications Doyne Bailey Assistant Managing Editor Deborah Watkins Production Editor
CONTRIBUTING EDITORS George Rosen, MD, PhD Public Health: Then and Now William J. Curran, JD, SMHyg Public Health and the Law
Established 1911
Extending Family Planning Services To the Mentally Retarded On page 1053 of this issue of the Journall is an article entitled "Family Planning Services for Persons Handicapped by Mental Retardation" which presents another aspect of the recent movement to handle the subject of sexuality through education and, in addition, illustrates the utilization of a public health service not specialized for the mentally retarded. In the past few years, many people such as Sol Gordon and Medora Bass,2 Winifred Kempton2'3 and others, plus agencies such as SIECUS,*4 have led the way in adopting a healthy approach to sexuality for mentally retarded persons. This approach comes at a most propitious time because it is in accord with recent concepts and trends of keeping this group of handicapped individuals in the community rather than in institutions. Perhaps one of the greatest concerns of parents who wish to keep their mentally retarded adolescents at home is the fear of problems related to sexual matters. Various Planned Parenthood groups, such as those mentioned in the article, the Philadelphia group,4 and others have provided support to these parents through the development of resource materials, training of parents, and preparation of "trainers". However, much more must be done to influence attitudes of the public so that mentally retarded people will be viewed as having the same rights and feelings as others in all aspects of life, including sexual matters. The basic principles of truthfulness and acceptance of responsibility for one's actions govern the approaches to teaching both retarded and non-retarded individuals. These approaches differ only in the way the content and presentation of material is geared to the level of understanding. The article in this Journal is another example of mainstreaming a special group into the human system of services-in this case, the public health sector. This approach is very healthy for the mentally retarded individual, as it reduces segregation, and is also economical to the public service system as demonstrated by the low cost and avoidance of duplication in the experiences described by Dr. David and his colleagues. Much more needs to be done to develop a system for delivering family planning services to those handicapped persons who are not reached by the agencies which are large enough to assign special staff to concentrate in this program area. Little has been done to evaluate or follow the progress of those prepared as trainers in sexual education. Some trainers seem- to restrict their activity to the professional-client relationship rather than using it to reach out to more groups so that sexual education can be disseminated and made available more widely. It is likely that the educational part of this package without the addition of the physical examination and family planning techniques would be less effective than the combined approach as described in the paper by Dr. David, et al. Now that a practical method has been successfully demonstrated it can be hoped that implementation on a large scale will follow. It is neither necessary nor possible to train everybody in all fields and techniques. However, it is necessary that the primary or generic family planning agencies have a staff person who is trained in special *Sex Information and Education Council of the United States.
AJPH November, 1976, Vol. 66, No. 1 1
l1049
EDITORIALS
techniques of communication and is aware of available resource materials dealing with sexual matters related to the handicapped, including the mentally retarded.5 I stress the handicapped as a group because of the areas of overlap, such as special considerations for the motor handicaps which affect many of the mentally retarded.6 Sexual education and family planning services for the handicapped can be more effective if parents and teachers of the handicapped stress from earliest childhood on the "commonly accepted conventions in the relationship between boys and girls, women and men, and the individual's self-image as it relates to these conventions."7 Greater utilization of our public health services by all types of individuals should be a goal for all of us. We cannot be satisfied until our system of services has been extended to all in need, regardless of handicap, race, economic level, or age. Dr. David's article on family planning services for the mentally retarded provides a valuable lesson-some problems are not as great as they seem; their solutions are ignored not because of the facts in the case but because of the prejudices of society.
REFERENCES 1. David, H. P., Smith, J. D., and Friedman, E. Family planning services for persons handicapped by mental retardation. Am. J. Public Health 66:1053-1057, 1976. 2. Kempton, W., Gordon, S., and Bass, M. Love, sex, and birth control for the mentally retarded-A guide for parents. Planned Parenthood Association of Southeastern Pennsylvania, Philadelphia, 1971. 3. Kempton, W. Guidelines for planning a training course on human sexuality and the retarded. Planned Parenthood Association of Southeastern Pennsylvania, Philadelphia, 1973. 4. A Resource Guide for Sex Education for the Mentally Retarded. SIECUS and American Association for Health, Physical Education and Recreation, New York, 1971. 5. Jaslow, R. A modern plan for modern services to the mentally retarded: Expanding community services to the mentally retarded. Clinical Pediatrics, 7:80-82, 1968. 6. Bregman, S. Sexuality and the spinal cord injured. Sister Kenny Institute, Minneapolis, 1975. 7. Dybwad, G. Personal Communication, 1976.
Address reprint requests to Dr. R. I. Jaslow, Assistant Director for Health Services, Woodhaven Center (Southeastern State School & Hospital), 2900 Southampton Road, Philadelphia, PA 19154.
ROBERT I. JASLOW, MD
Privacy, Research, and the Health of the Public The broad ranging scrutiny of measures to protect the individual's right to privacy that is underway at the federal and local level has now focused attention on the confidentiality of medical and other records containing healthrelated data. The outcome could be restrictive legislative or regulatory actions by governmental agencies or independent decisions by health care providers and institutions that seriously impede the conduct of epidemiologic, health services, environmental, and occupational studies on many significant public health issues. On the other hand, the recognition of this possibility could result in efforts never previously considered necessary, to disseminate widely knowledge about the essential role of health record information in scientific research and the rigorous adherence to high ethical standards already required and monitored by Institutional Review Boards on Protection of Human Subjects. The end sought would be a new understanding of the value of research dependent on medical and related records and the need to continue to utilize these records under conditions that do not impede the research while protecting the confidentiality of the data. Efforts to make this case do not ordinarily occur except in response to what is perceived as an immediate danger. Such a response was evoked recently by the request of the 1050
Privacy Protection Study Commission,* established under the 1974 Privacy Act (P.L. 93-579), for reactions to policies and procedures being considered to protect the confidentiality of medical records.' Among the various provisions on which the Commission invited comment was the following principle: "4. No individually identifiable information should be released by the hospital, facility, agency or health care provider without the subject's express written consent. This consent must specifically state the information to be disclosed and the individual or organization to whom it is to be disclosed...." (Several exceptions are cited, none of which refers to research needs.)
Clearly, the intent of this principle should be supported but as it stands it would have a far reaching negative impact on many socially useful investigations, e.g., epidemiologic studies of risk factors for specific diseases, evaluation of new approaches for the early detection and treatment of disease, and research on the delivery of health care. This appraisal has been communicated to the Commission in various ways, including: 1) testimony at their public hearings in Los Ange*The Privacy Protection Study Commission's address is 2120 L Street, NW, Suite 424, Washington, DC 20506.
MJPH November, 1976, Vol. 66, No. 1 1
November 1976 Volume 66, Number 11
EDITOR Alfred Yankauer, MD, MPH
EDITORIAL BOARD Michel A. Ibrahim, MD, PhD (1977) Chairman Faye G. Abdellah, PhD (1977) Rashi Fein, PhD (1978) Ruth B. Galanter, MCP (1977) H. Jack Geiger, MD, MSciHyg (1978) George E. Hardy, Jr., MD, MPH (1978) C. C. Johnson, Jr., MSCE (1977) M. Allen Pond, MPH (1976) Pauline 0. Roberts, MD, MPH (1976) Ruth Roemer, JD (1978) Sam Shapiro (1976) Robert Sigmond (1976) Jeannette J. Simmons, MPH, DSc (1978) David H. Wegman, MD, MSOH (1976) Robert J. Weiss, MD (1977)
STAFF William H. McBeath, MD, MPH Executive DirectorlManaging Editor Allen J. Seeber Director of Publications Doyne Bailey Assistant Managing Editor Deborah Watkins Production Editor
CONTRIBUTING EDITORS George Rosen, MD, PhD Public Health: Then and Now William J. Curran, JD, SMHyg Public Health and the Law
Established 1911
Extending Family Planning Services To the Mentally Retarded On page 1053 of this issue of the Journall is an article entitled "Family Planning Services for Persons Handicapped by Mental Retardation" which presents another aspect of the recent movement to handle the subject of sexuality through education and, in addition, illustrates the utilization of a public health service not specialized for the mentally retarded. In the past few years, many people such as Sol Gordon and Medora Bass,2 Winifred Kempton2'3 and others, plus agencies such as SIECUS,*4 have led the way in adopting a healthy approach to sexuality for mentally retarded persons. This approach comes at a most propitious time because it is in accord with recent concepts and trends of keeping this group of handicapped individuals in the community rather than in institutions. Perhaps one of the greatest concerns of parents who wish to keep their mentally retarded adolescents at home is the fear of problems related to sexual matters. Various Planned Parenthood groups, such as those mentioned in the article, the Philadelphia group,4 and others have provided support to these parents through the development of resource materials, training of parents, and preparation of "trainers". However, much more must be done to influence attitudes of the public so that mentally retarded people will be viewed as having the same rights and feelings as others in all aspects of life, including sexual matters. The basic principles of truthfulness and acceptance of responsibility for one's actions govern the approaches to teaching both retarded and non-retarded individuals. These approaches differ only in the way the content and presentation of material is geared to the level of understanding. The article in this Journal is another example of mainstreaming a special group into the human system of services-in this case, the public health sector. This approach is very healthy for the mentally retarded individual, as it reduces segregation, and is also economical to the public service system as demonstrated by the low cost and avoidance of duplication in the experiences described by Dr. David and his colleagues. Much more needs to be done to develop a system for delivering family planning services to those handicapped persons who are not reached by the agencies which are large enough to assign special staff to concentrate in this program area. Little has been done to evaluate or follow the progress of those prepared as trainers in sexual education. Some trainers seem- to restrict their activity to the professional-client relationship rather than using it to reach out to more groups so that sexual education can be disseminated and made available more widely. It is likely that the educational part of this package without the addition of the physical examination and family planning techniques would be less effective than the combined approach as described in the paper by Dr. David, et al. Now that a practical method has been successfully demonstrated it can be hoped that implementation on a large scale will follow. It is neither necessary nor possible to train everybody in all fields and techniques. However, it is necessary that the primary or generic family planning agencies have a staff person who is trained in special *Sex Information and Education Council of the United States.
AJPH November, 1976, Vol. 66, No. 1 1
l1049
EDITORIALS
techniques of communication and is aware of available resource materials dealing with sexual matters related to the handicapped, including the mentally retarded.5 I stress the handicapped as a group because of the areas of overlap, such as special considerations for the motor handicaps which affect many of the mentally retarded.6 Sexual education and family planning services for the handicapped can be more effective if parents and teachers of the handicapped stress from earliest childhood on the "commonly accepted conventions in the relationship between boys and girls, women and men, and the individual's self-image as it relates to these conventions."7 Greater utilization of our public health services by all types of individuals should be a goal for all of us. We cannot be satisfied until our system of services has been extended to all in need, regardless of handicap, race, economic level, or age. Dr. David's article on family planning services for the mentally retarded provides a valuable lesson-some problems are not as great as they seem; their solutions are ignored not because of the facts in the case but because of the prejudices of society.
REFERENCES 1. David, H. P., Smith, J. D., and Friedman, E. Family planning services for persons handicapped by mental retardation. Am. J. Public Health 66:1053-1057, 1976. 2. Kempton, W., Gordon, S., and Bass, M. Love, sex, and birth control for the mentally retarded-A guide for parents. Planned Parenthood Association of Southeastern Pennsylvania, Philadelphia, 1971. 3. Kempton, W. Guidelines for planning a training course on human sexuality and the retarded. Planned Parenthood Association of Southeastern Pennsylvania, Philadelphia, 1973. 4. A Resource Guide for Sex Education for the Mentally Retarded. SIECUS and American Association for Health, Physical Education and Recreation, New York, 1971. 5. Jaslow, R. A modern plan for modern services to the mentally retarded: Expanding community services to the mentally retarded. Clinical Pediatrics, 7:80-82, 1968. 6. Bregman, S. Sexuality and the spinal cord injured. Sister Kenny Institute, Minneapolis, 1975. 7. Dybwad, G. Personal Communication, 1976.
Address reprint requests to Dr. R. I. Jaslow, Assistant Director for Health Services, Woodhaven Center (Southeastern State School & Hospital), 2900 Southampton Road, Philadelphia, PA 19154.
ROBERT I. JASLOW, MD
Privacy, Research, and the Health of the Public The broad ranging scrutiny of measures to protect the individual's right to privacy that is underway at the federal and local level has now focused attention on the confidentiality of medical and other records containing healthrelated data. The outcome could be restrictive legislative or regulatory actions by governmental agencies or independent decisions by health care providers and institutions that seriously impede the conduct of epidemiologic, health services, environmental, and occupational studies on many significant public health issues. On the other hand, the recognition of this possibility could result in efforts never previously considered necessary, to disseminate widely knowledge about the essential role of health record information in scientific research and the rigorous adherence to high ethical standards already required and monitored by Institutional Review Boards on Protection of Human Subjects. The end sought would be a new understanding of the value of research dependent on medical and related records and the need to continue to utilize these records under conditions that do not impede the research while protecting the confidentiality of the data. Efforts to make this case do not ordinarily occur except in response to what is perceived as an immediate danger. Such a response was evoked recently by the request of the 1050
Privacy Protection Study Commission,* established under the 1974 Privacy Act (P.L. 93-579), for reactions to policies and procedures being considered to protect the confidentiality of medical records.' Among the various provisions on which the Commission invited comment was the following principle: "4. No individually identifiable information should be released by the hospital, facility, agency or health care provider without the subject's express written consent. This consent must specifically state the information to be disclosed and the individual or organization to whom it is to be disclosed...." (Several exceptions are cited, none of which refers to research needs.)
Clearly, the intent of this principle should be supported but as it stands it would have a far reaching negative impact on many socially useful investigations, e.g., epidemiologic studies of risk factors for specific diseases, evaluation of new approaches for the early detection and treatment of disease, and research on the delivery of health care. This appraisal has been communicated to the Commission in various ways, including: 1) testimony at their public hearings in Los Ange*The Privacy Protection Study Commission's address is 2120 L Street, NW, Suite 424, Washington, DC 20506.
MJPH November, 1976, Vol. 66, No. 1 1
