Learning to swim in a sea of genomic data

A report on the 63rd American Society of Human Genetics (ASHG) meeting held in Boston, USA, 22–26 October 2013.     

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.     

2020 ASHG presidential address: the ‘BIG TENT’ of genetics/genomics and our world

This article is based on the address given by the author at the 2020 virtual meeting of the American Society of Human Genetics (ASHG) on October 26, 2020. The video of the original address can be found at the ASHG website.     

ASHG 2020 Curt Stern Award introduction: Fowzan Sami Alkuraya

This article is based on the address given by the author at the 2020 virtual meeting of the American Society of Human Genetics (ASHG) on October 26, 2020. The video of the original address can be found at the ASHG website.     

The spliceosomal catalytic core arose in the RNA world… or did it?

A report on the 63rd American Society of Human Genetics (ASHG) meeting held in Boston, USA, 22–26 October 2013.     

2020 William Allan Award address: genetics as a way of thinking—cultural inheritance from our teachers

This article is based on the address given by the author at the 2020 virtual meeting of The American Society of Human Genetics (ASHG) on October 26, 2020. The video of the original address can be found at the ASHG website.     

2020 William Allan Award introduction: Mary-Claire King

This article is based on the address given by the author at the 2020 virtual meeting of the American Society of Human Genetics (ASHG) on October 26, 2020. The video of the original address can be found at the ASHG website. Photo credit: Clare McLean.     

ASHG activities relative to education. Heredity and adoption: a survey of state adoption agencies.

A subcommittee of The Social Issues Committee of The American Society of Human Genetics (ASHG), aware of the growing interest in the implications of inheritance and adoption, in 1987 began surveying the 50 states' and Washington DC's public adoption agencies regarding this issue, and it completed the survey in 1988. In 1987, two surveys obtained data on each state's legal requirements for obtaining genetic information and on what each public adoption agency collected as genetic history. These results were presented in a poster at the 1987 ASHG annual meeting in San Diego. In 1988, a questionnaire was sent to the same agencies to elicit opinions as to whether adoption agencies should systematically collect genetic information to share with the adoptive family and adoptee, whether legislation should be mandated to collect such information, and whether genetic education programs should be developed and implemented for adoption-agency staff. On the basis of responses to the 1988 questionnaire, it was concluded that there is an interest in developing a uniform set of genetic information which should be part of a child's adoption record and that there is a need for genetic education programs for adoption workers. Responses to the desirability of mandating legislation for this purpose were less consistent.     

Essay contest reveals misconceptions of high school students in genetics content

National educational organizations have called upon scientists to become involved in K-12 education reform. From sporadic interaction with students to more sustained partnerships with teachers, the engagement of scientists takes many forms. In this case, scientists from the American Society of Human Genetics (ASHG), the Genetics Society of America (GSA), and the National Society of Genetic Counselors (NSGC) have partnered to organize an essay contest for high school students as part of the activities surrounding National DNA Day. We describe a systematic analysis of 500 of 2443 total essays submitted in response to this contest over 2 years. Our analysis reveals the nature of student misconceptions in genetics, the possible sources of these misconceptions, and potential ways to galvanize genetics education.     

2010 ASHG Awards and Addresses

Each year at the annual meeting of The American Society of Human Genetics (ASHG), addresses are given in honor of The Society and a number of award winners. A summary of each of these addresses is given below. On the next pages, we have printed the Presidential Address and the addresses for the William Allan Award and the Victor A. McKusick Leadership Award. Webcasts of these addresses, as well as webcasts of many other presentations, can be found at http://www.ashg.org.     

2011 ASHG Awards and Addresses

Each year at the annual meeting of The American Society of Human Genetics (ASHG), addresses are given in honor of the Society and a number of award winners. A summary of each of these addresses is given below. On the following pages, we have printed the Presidential Address and the addresses for the William Allan and Curt Stern Awards. Webcasts of these addresses, as well as those of many other presentations, can be found at http://www.ashg.org.     

2012 ASHG Awards and Addresses

Each year at the annual meeting of The American Society of Human Genetics (ASHG), addresses are given in honor of the Society and a number of award winners. A summary of each of these addresses is given below. On the following pages, we have printed the Presidential Address and the addresses for the William Allan and Curt Stern Awards. Webcasts of these addresses, as well as those of many other presentations, can be found at http://www.ashg.org.     

2009 ASHG Awards and Addresses

Each year at the annual meeting of the American Society of Human Genetics (ASHG), addresses are given in honor of the society and a number of award winners. A summary of each of these addresses is given below. On the following pages, we have printed the Presidential Address and the addresses for the William Allan Award. Many of the other addresses, accompanied by pictures of the speakers, can be found at www.ashg.org.     

2015 ASHG Awards and Addresses

Each year at the annual meeting of The American Society of Human Genetics (ASHG), addresses are given in honor of The Society and a number of award winners. A summary of each of these is given below. On the following pages, we have printed the presidential address and the addresses for the William Allan Award, the Curt Stern Award, and the Victor A. McKusick Leadership Award. Webcasts of these addresses, as well as those of many other presentations, can be found at http://www.ashg.org.     

2014 ASHG Awards and Addresses

Each year at the annual meeting of The American Society of Human Genetics (ASHG), addresses are given in honor of The Society and a number of award winners. A summary of each of these addresses is given below. On the following pages, we have printed the presidential address and the addresses for the William Allan Award, the Curt Stern Award, and the Victor A. McKusick Leadership Award. Webcasts of these addresses, as well as those of many other presentations, can be found at http://www.ashg.org.     

Education and certification of genetic counselors.

Genetic counseling is defined by the American Society of Human Genetics as a communication process which deals with the human problems associated with the occurrence, or risk of occurrence, of a genetic disorder in a family. The first graduate program (Master's degree) in genetic counseling started in 1969 at Sarah Lawrence College, NY, USA, while in 1979 the National Society of Genetic Counseling (NSGC) was established. Today, there are 29 programs in U.S.A. offering a Master's degree in Genetic Counseling, five programs in Canada, one in Mexico, one in England and one in S. Africa. Most of these graduate programs offer two year training, consisting of graduate courses, seminars, research and practical training. Emphasis is given in human physiology, biochemistry, clinical genetics, cytogenetics, molecular and biochemical genetics, population genetics and statistics, prenatal diagnosis, teratology and genetic counseling in relation to psychosocial and ethical issues. Certification for eligible candidates is available through the American Board of Medical Genetics (ABMG). Requirements for certification include a master's degree in human genetics, training at sites accredited by the ABMG, documentation of genetic counseling experience, evidence of continuing education and successful completion of a comprehensive ABMG certification examination. As professionals, genetic counselors should maintain expertise, should insure mechanisms for professional advancement and should always maintain the ability to approach their patients.     

2013 ASHG Awards and Addresses

Each year at the annual meeting of The American Society of Human Genetics (ASHG), addresses are given in honor of The Society and a number of award winners. A summary of each of these addresses is given below. On the following pages, we have printed the Presidential Address and the addresses for the William Allan Award, the Curt Stern Award, and the Victor A. McKusick Leadership Award. Webcasts of these addresses, as well as those of many other presentations, can be found at http://www.ashg.org.     

The Cold War Context of the Golden Jubilee,Or, Why We Think of Mendel as the Father of Genetics

In September 1950, the Genetics Society of America (GSA) dedicated its annual meeting to a "Golden Jubilee of Genetics" that celebrated the 50th anniversary of the rediscovery of Mendel's work. This program, originally intended as a small ceremony attached to the coattails of the American Institute of Biological Sciences (AIBS) meeting, turned into a publicity juggernaut that generated coverage on Mendel and the accomplishments of Western genetics in countless newspapers and radio broadcasts. The Golden Jubilee merits historical attention as both an intriguing instance of scientific commemoration and as an early example of Cold War political theatre. Instead of condemning either Lysenko or Soviet genetics, the Golden Jubilee would celebrate Mendel - and, not coincidentally, the practical achievements in plant and animal breeding his work had made possible. The American geneticists' focus on the achievements of Western genetics as both practical and theoretical, international, and, above all, non-ideological and non-controversial, was fully intended to demonstrate the success of the Western model of science to both the American public and scientists abroad at a key transition point in the Cold War. An implicit part of this article's argument, therefore, is the pervasive impact of the Cold War in unanticipated corners of postwar scientific culture.     

DTC genetic testing companies fail transparency prescriptions

In 2007, the American Society of Human Genetics issued recommendations for what the new and largely self-regulating industry offering genetic tests directly to consumers should disclose to potential customers. Websites for every DTC company offering health-related genetic tests as identified by a public policy group were evaluated for compliance with those transparency recommendations. The results showed that only six of the 25 companies studied met even 70% of the standards and that overall, the industry complied with the disclosure standards just 44% of the time. Further, the study revealed that even when companies met the letter of the law, they often failed to disclose to consumers the shortcomings associated with the tests and thus promoted genetic determinism. By failing to meet the spirit of the ASHG transparency recommendations, the DTC genetic testing industry demonstrates disdain toward the ethical principle of informed consent.     

Human genetics in full resolution

A report on the 12th International Congress of Human Genetics, joint with the 61st annual American Society of Human Genetics conference, Montreal, Quebec, 11-15 October 2011.