Secretary's Advisory Committee Research Articles

The tragic history of AIDS in the hemophilia population, 1982-1984.

The tragic history of AIDS in the hemophilia population, 1982-1984.

Task Force: U.S. Needs New Nukes

A Department of Energy (DOE) task force report slams as “neither robust nor agile” the government's ongoing effort to certify aging bombs as reliable. The report, approved by the energy secretary's advisory committee last week, calls for new weapons that would be cheap to build, long-lasting, and hard to steal—without resuming nuclear testing.

Draft reports for public comment from the US Secretary's Advisory Committee on Xenotransplantation

Draft reports for public comment from the US Secretary's Advisory Committee on Xenotransplantation

Pediatric practice and education in the genomic/postgenomic era

Pediatric practice and education in the genomic/postgenomic era

Position statement: Integrating genetics competencies into baccalaureate and advanced nursing education

The progress of the Human Genome Project (HGP), other genetic research, and the development of genetic technologies provide knowledge for new ways to improve the health of the nation. It is clear that these developments will have a great impact on the future of nursing health care practice, education, research, and policies. Nurses and other health care professionals will have an expanding role in the management of genetic testing and counseling services, in monitoring the effects of genetic testing, and in using genetic information as the basis for medical interventions, pharmaceuticals, and nursing biobehavioral interventions. Risk will commonly be conveyed to patients and families in terms of genetic findings, among others. New discoveries will likely lead to use of genetic information for choosing the correct drug or treatment and monitoring the effects of treatments and interventions. Nurses, along with other health professionals, will support individuals in their decision to have a genetic test or therapy, and in understanding the application of new genetic discoveries for selection of treatment options. Genetic information will increasingly be used not only for predictive risk assessment and reproductive decision making, but also for prognostic information and to help identify the therapies of choice, including drug therapies, to treat the health problem. Clients and their families will expect nurses to clarify, interpret, and reinforce information gained from genetic tests and decisions about health management. They will also expect nurses to help individuals and their families comprehend the health implications and make informed decisions. These activities will take place not only in hospitals and clinics, but also in a variety of other settings where nurses practice, for example, public health agencies, schools, and workplaces. Nurses are attuned to the need for culturally competent care, which includes having sensitivity to the need for accessible health care, genetic testing, and counseling services for all persons. 1 American Academy of Nursing Comment from the American Academy of Nursing on the Secretary's Advisory Committee on Genetic Testing Document: A public consultation on oversight of genetic tests. The Academy, Bethesda2000 Google Scholar

Update on the Secretary's Advisory Committee on Genetic Testing

On February 13 and 14, 2002, the SACGT Expert Panel met in Washington DC. A report was given on Health and Human Services (HHS) efforts to advance knowledge of the clinical validity and utility of genetic tests. Each of the agencies that serves as a non-voting ex officio member of the Committee was asked to report on its efforts. It was clear from the reports that some agencies have far more responsibility in this area than do others, and also that there are areas where more than one agency works, sometimes together and sometimes in parallel.

Commercial molecular diagnostics in the U.S.: The Human Genome Project to the clinical laboratory.

Molecular diagnosis is the detection of pathogenic mutations in DNA and RNA samples to aid in detection, diagnosis, subclassification, prognosis, and monitoring response to therapy. Principles underlying nucleic-based diagnosis originate from localization, identification, and characterization of genes responsible for human disease. Clinical molecular genetics is now part of the mainstream of medical care in the United States. All commercial clinical reference laboratories now have a molecular genetic diagnostic unit, many of which are in contractual agreement with third party payers to provide services. Gene discovery provides valuable insight into the mechanisms of disease processes and gene-based markers will enable clinicians to study disease predisposition, as well as improved methods for diagnoses, prognosis, and monitoring of therapy. The broad range of mutation spectrum and type performed in the clinical laboratory requires the use of multiple technologies rather than a single typing platform. Platform choice depends on such diverse factors as local expertise, test volume, economies of scale, R&D budget, and royalties. Test validation is a major hurdle and positive control samples are often not readily available. Oversight and the regulatory environment for clinical molecular genetics laboratories in the United States are evolving rapidly. Several government agencies and private organizations are currently involved in revision of specific laboratory standards, including the Secretary's Advisory Committee on Genetic Testing (SACGT), Food and Drug Administration (FDA), Center for Disease Control (CDC), College of American Pathologists (CAP), American College of Medical Genetics (ACMG), and the individual states.

2001 Association for Molecular Pathology Annual Meeting

The Association for Molecular Pathology (AMP) held a very successful annual meeting November 15–18, 2001 in Philadelphia, Pennsylvania. AMP was very pleased to open its seventh annual meeting by presenting its Award for Excellence to Dr. Bert Vogelstein of John Hopkins University. This award, sponsored by Visible Genetics, Inc., (Toronto, Canada) is presented annually to a scientist who has made major contributions affecting our field. Dr. Vogelstein has been instrumental to our current level of understanding of the molecular events leading to development of colorectal cancer. In his address, he covered the genomic alterations uncovered in early studies, molecular mechanisms of genomic micro- and macroinstability, and newer studies examining gene expression changes in colorectal tumors. He discussed several examples of genes involved in regulation of angiogenesis, and presented technical approaches, such as “digital PCR,” used in his lab to improve sequencing results and detection of heterozygous mutations. We would like to congratulate Dr. Vogelstein and thank him for attending the meeting.

The Human Genome and Public Policy: A Nursing Perspective

The Human Genome Project has completed a rough draft of the sequence that comprises human DNA. For the first time, the scientific discoveries have been conducted in tandem with research exploring the social, legal, and ethical implications of the research. Several committees have studied the policy implications of the genetics information explosion. The Secretary's Advisory Committee on Genetic Testing's report was received by the Secretary of the U.S. Department of Health and Human Services in November 2000 and contains recommendations for the oversight of genetic testing. Public policy issues that affect nursing practice in the area of genetics must be explored by individual nurses and professional nursing organizations.

Political action: Genetic testing appointment

The letter from Secretary Shalala appointing me to the Secretary's Advisory Committee on Genetic Testing (SACGT) was dated April 12, 1999. The date would have been my sister's 50th birthday, except my sister had died of cystic fibrosis shortly before her sixth birthday. A brother, who had been born a year before me, had died at age 2 weeks, and it was only after my sister's diagnosis that we learned his meconium ileus also had been due to cystic fibrosis. Clearly, genetic illness has had a large impact on my family. My father was an early leader in the National Cystic Fibrosis Association: he founded chapters in 5 of the 6 New England States, was the first president of the Massachusetts chapter, and was a member of the original Board of Directors of the National Association.

Bringing oncology nursing front and center

This article represents the third in a series of three articles about testimony given regarding Genetic Testing. The Oncology Nursing Society (ONS) is the largest professional oncology association in the world, with more than 29,000 members. The provision of testimony at the public meeting for commentary on the Secretary's Advisory Committee on Genetic Testing initial report in January 2000 provides an excellent example of how ONS is transforming cancer care.

International Society of Nurses in Genetics (ISONG) testimony for the secretary's Advisory Committee on Genetic Testing

International Society of Nurses in Genetics (ISONG) testimony for the secretary's Advisory Committee on Genetic Testing

Comments on the Secretary's Advisory Committee on genetic testing document: A public consultation on oversight of genetic tests, January 27, 2000, Baltimore, Maryland

Earlier this year the American Academy of Nursing had the opportunity to respond to the request for public input on the Secretary's Advisory Committee on Genetic Testing.

Preliminary draft recommendations from the Secretary's Advisory Committee on Genetic Testing

Preliminary draft recommendations from the Secretary's Advisory Committee on Genetic Testing

3. A kindergarten screening index to predict reading failure

The Report of the Secretary's ( H E W ) National Advisory Committee on Dyslexia and Related Reading Disorders (Reading Disorders in the United States) has publicized the uncomfortable fact that, "within the existing educational system across the nation, an estimated 15 percent of otherwise able students experience difficulty in learning to read. This difficulty is of sufficient severity to impair seriously the overall learning experience of these students and their ultimate usefulness and adaptability to a modern society . . . [This] failure to learn to read ranks among the most serious educational problems confronting the nation." In spite of other available media for communication, "reading, the crux of most learning, is indispensable in the modern era, which depends on written communication for both personal and national survival" (Roswell and Natchez 1964). James E. Allen, former United States Commissioner of Education, in his address at the Orton Society Conference in 1971 (Allen 1971), forcefully stated that *'The school must accept the responsibility for the teaching of reading for each individual child . . . . Both prevention and cure must be provided for . . . . In other words, help for identification, prevention, and cure of reading deficiencies should be available whenever and wherever it is needed. No child should be denied his *right to read' because of location or of social or economic status." This implies a massive intervention program for all children, both those who are culturally and/or economically deprived and those middle-class children "who present deficits in areas related not only to the manipulation of numerical and verbal symbols, but to learning in general" (de Hirsch 1971). But the time and age at which intervention should take place in the education of a child seems of paramount importance. A report by Schiffman (1964) based on a review of 10,000 cases indicated that when children are identified as learning disabled in the second grade, 82 percent of them