Statement

Engaging with Research Participants

Engaging with Research Participants

In 1999, ASHG and the Genetic Alliance organized a workshop designed to examine the conduct of human genetics research. Workshop attendees identified themes related to research conduct, proposed a new model of relationship between research and participants, and developed a consensus statement and recommendations to advance the new model. Related: Genetic Lay Advocacy Groups: Significant... Read More

Driving Gene Therapy Forward

Driving Gene Therapy Forward

In 2000, recognizing the involvement of ASHG members in gene therapy research and implementation, ASHG issued a statement commenting on the need for rigorous research and consideration of patient interests. Related: Statement on Gene Therapy (August 2000) Read More

Addressing Tandem MS in Newborn Screening

Addressing Tandem MS in Newborn Screening

ASHG and the American College of Medical Genetics issued a 2000 statement describing tandem mass spectrometry and its potential role in newborn screening programs. The statement describes the state of the science as well as questions to be considered in its implementation, including funding and training. Related: Statement on Tandem Mass Spectrometry in Newborn Screening... Read More

Defining Informed Consent for Genetics Research

Defining Informed Consent for Genetics Research

American Society of Human Genetics is committed to protecting the rights and welfare of those who participate in genetics and genomics research. In separate statements, the Society examined different aspects of informed consent, including the use of family medical history of research participants, and the use of collected samples and proper disposition of samples and... Read More

Considering Family Privacy in Genetic Research and Medicine

Considering Family Privacy in Genetic Research and Medicine

Genetic information about an individual reveals genetic risk information about both the individual and other family members. ASHG issued a statement in 2000 considering the importance of family medical history in genetics research and its balance with ensuring the genetic privacy of research participants’ relatives, and one in 1998 commenting on this balance in the... Read More

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