Researchers, institutional review boards (IRBs), participants in human subjects research,
and their families face an important but largely neglected problem—how should incidental …

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 …

New developments in the treatment and management of phenylketonuria (PKU) as well as
advances in molecular testing have emerged since the National Institutes of Health 2000 …

Biobanks and archived data sets collecting samples and data have become crucial engines
of genetic and genomic research. Unresolved, however, is what responsibilities biobanks …

Clinical Trials and Medical Care: Defining the Therapeutic Misconception | PLOS Medicine Skip
to main content Advertisement PLOS Medicine Browse Current Issue Journal Archive Special …

In November 2003, CDC and the Cystic Fibrosis Foundation cosponsored a workshop to
review the benefits and risks associated with newborn screening for cystic fibrosis (CF). This …

Different types of consent are used to obtain human biospecimens for future research. This
variation has resulted in confusion regarding what research is permitted, inadvertent …

Since the first American Thoracic Society statement regarding the diagnosis and
management of severe alpha-1 antitrypsin (AAT) deficiency in 1989 (1) and the initial …

Investigators and institutional review boards should integrate plans about the appropriate
disclosure of individual genetic results when designing research studies. The ethical …

BACKGROUND: Children with trisomy 13 and trisomy 18 (T13-18) have low survival rates
and survivors have significant disabilities. For these reasons, interventions are generally not …