Abusing science.

The perversion of science in the interest of ideology and greed is not a new phenomenon, but a public that is largely scientifically illiterate now is besieged by "alternative facts" and well-designed efforts to discredit legitimate science on topics ranging from vaccines to climate change. Here, we examine three topics rooted in biology and biomedicine-creationism, harms from tobacco, and opioid addiction-to show that those purveying misinformation employ a consistent pattern of intellectual dishonesty to delegitimize science that challenges their ideological positions. Individual scientists and the scientific community at large should confront and counter these attacks on the intellectual integrity that is at the heart of the scientific enterprise.

Points to Consider: Ethical, Legal, and Psychosocial Implications of Genetic Testing in Children and Adolescents.

In 1995, the American Society of Human Genetics (ASHG) and American College of Medical Genetics and Genomics (ACMG) jointly published a statement on genetic testing in children and adolescents. In the past 20 years, much has changed in the field of genetics, including the development of powerful new technologies, new data from genetic research on children and adolescents, and substantial clinical experience. This statement represents current opinion by the ASHG on the ethical, legal, and social issues concerning genetic testing in children. These recommendations are relevant to families, clinicians, and investigators. After a brief review of the 1995 statement and major changes in genetic technologies in recent years, this statement offers points to consider on a broad range of test technologies and their applications in clinical medicine and research. Recommendations are also made for record and communication issues in this domain and for professional education.

Family history in primary care pediatrics.

The family history has been called the first genetic test; it was a core element of primary care long before the current wave of genetics technologies and services became clinically relevant. Risk assessment based on family history allows providers to personalize and prioritize health messages, shifts the focus of health care from treatment to prevention, and can empower individuals and families to be stewards of their own health. In a world of rising health care costs, the family history is an important tool, with its primary cost being the clinician's time. However, a recent National Institutes of Health conference highlighted the lack of substantive evidence to support the clinical utility of family histories. Annual collection of a comprehensive 3-generation family history has been held up as the gold standard for practice. However, interval family histories targeted to symptoms and family histories tailored to a child's life stage (ie, age-based health) may be important and underappreciated methods of collecting family history that yield clinically actionable data and supplement existing family history information. In this article, we review the various applications, as well as capabilities and limitations, of the family history for primary care providers.

Personalizing prenatal care using family health history: identifying a panel of conditions for a novel electronic genetic screening tool.

In the age of genomic medicine, family health history (FHH) remains an important tool for personalized risk assessment as it can inform approaches to disease prevention and management. In primary care, including in prenatal settings, providers recognize that FHH enables them to assess the risk for birth defects and complex conditions that not only affect the fetus health, but also the mother's. However, many providers lack the time to gather FHH or the knowledge to confidently interpret the data. Electronic tools providing clinical decision support using FHH data can aid the busy provider with data collection and interpretation. We describe the scope of conditions included in a patient-entered FHH tool that provides clinical decision support and point-of-care education to assist with patient management. This report details how we selected the conditions for which it is appropriate to use FHH as a means to promote personalized medicine in primary prenatal care.

Preparing health professionals for individualized medicine.

Genomic medicine holds the prospect of transforming clinical medicine and public health, but the current understanding of genetics and genomics among health professionals is a major impediment to the integration of genomic technologies into mainstream practice. Effective and consistent education is a central component of the translation of research into practical application. The National Coalition for Health Professional Education in Genetics (MD, USA) has more than a decade of experience in the development of educational programs that help to incorporate genomic medicine into education and practice.

Genetics education for health professionals: a context.

Education of health professionals about genetics is essential to the integration of genetics into mainstream health care, but there are a number of associated challenges. By virtue of their training, genetic counselors are well suited to address many of those challenges and to assume a variety of roles related to genetics education for health professionals. This paper provides a brief overview of the status of genetics education for non-genetics health professionals and reviews the context in which educational efforts are likely to occur.

Providers' knowledge of genetics: A survey of 5915 individuals and families with genetic conditions.

PURPOSE: Individuals affected by genetic conditions are increasingly likely to seek information about inheritance and risk factors from their primary care physicians rather than a geneticist, but several studies suggest that few health care providers are capable of fulfilling that role or are comfortable doing so. Acknowledging that the adoption of new genetics knowledge and technologies is often patient-driven, we asked affected individuals and family members about their experiences in encounters with a variety of nongenetics-trained health care providers. METHODS: Staff at the National Coalition for Health Professional Education in Genetics, the Genetic Alliance, and a University of Maryland graduate student in genetic counseling drafted a web-based survey. We recruited study participants from the Genetic Alliance, and a total of 5915 respondents completed the questionnaire between December 2004 and August 2005. RESULTS: Overall, 64% of respondents reported receiving no genetics education materials from the provider type named most important in the management of the condition in the family. We present knowledge ratings for various provider types and themes emerging from written descriptions of positive and disappointing experiences. CONCLUSION: We discuss the implications of these and other results for continuing genetics education and for clinical practice.

Educating health-care professionals about genetics and genomics.

To biomedical researchers, this is the 'genome era'. Advances in genetics and genomics such as the sequence of the human genome, the human haplotype map, open access databases, cheaper genotyping and chemical genomics have already transformed basic and translational biomedical research. However, for most clinicians, the genome era has not yet arrived. For genomics to have an effect on clinical practice that is comparable to its impact on research will require advances in the genomic literacy of health-care providers. Here we describe the knowledge, skills and attitudes that genomic medicine will require, and approaches to integrate them into the health-care community.