Type

Journal Article

Who is responsible for promoting equity in rare disease research?

View online source

Authors:

Matthew S. McCoy

Year:

2023

The American Journal of Bioethics

Return to Search Results

Share

Related Publications

Book

State roles in health: A snapshot for state legislators
Book

Genetic counseling and cystic fibrosis carrier screening: Results of a survey, background paper
Book

Cystic fibrosis and DNA tests: Implications of carrier screening
Book

The troubled dream of genetic medicine: Ethnicity and innovation in Tay-Sachs, cystic fibrosis, and sickle cell disease
Book

Cystic fibrosis and DNA tests: Implications of carrier screening: Summary
Book Chapter

Systematic neonatal screening and carrier detection: Lessons from sickle cell disease and cystic fibrosis screening in France
Book Chapter

Carrier detection in newborns: Should it be discovered? Should it be disclosed? Lessons from sickle cell anemia and cystic fibrosis screening in the United States
Book Chapter

Cystic fibrosis: Screening, testing, ethics
Journal Article

PCR-based Cystic Fibrosis (CF) carrier screening in a first-year medical student biochemistry laboratory
Journal Article

Screening policy for cystic fibrosis. The role of evidence
Journal Article

Gene patents and licensing: Case studies prepared for the Secretary's Advisory Committee on Genetics, Health, and Society
Journal Article

Impact of gene patents and licensing practices on access to genetic testing and carrier screening for Tay-Sachs and Canavan disease
Journal Article

Impact of gene patents and licensing practices on access to genetic testing for cystic fibrosis
Journal Article

Genetic testing likelihood: The impact of abortion views and quality of life information on women's decisions
Journal Article

Association between carrier screening and incidence of cystic fibrosis
Journal Article

Carrier screening, incidence of cystic fibrosis, and difficult decisions
Journal Article

Population screening for genetic disorders in the 21st century: Evidence, economics, and ethics
Journal Article

Population-based genetic screening for cystic fibrosis: Attitudes and outcomes
Journal Article

Informing policy for the Australian context - costs, outcomes and cost savings of prenatal carrier screening for cystic fibrosis
Journal Article

Ethical considerations in choosing a model for population-based cystic fibrosis carrier screening
Journal Article

Carrier screening for cystic fibrosis in US genetic testing laboratories: A survey of laboratory directors
Journal Article

Anxiety related to genetic testing for alpha-1 antitrypsin deficiency and cystic fibrosis in COPD and/or bronchiectasis patients
Journal Article

It is not in my world': An exploration of attitudes and influences associated with cystic fibrosis carrier screening
Journal Article

Three-month follow-up of Western and non-Western participants in a study on preconceptional ancestry-based carrier couple screening for cystic fibrosis and hemoglobinopathies in the Netherlands
Journal Article

Telling the parents: Newborn blood spot screening for cystic fibrosis
Journal Article

Is cystic fibrosis carrier screening cost effective?
Journal Article

Factors affecting decisions to accept or decline cystic fibrosis carrier testing/screening: A theory-guided systematic review
Journal Article

Implementation of preconceptional carrier screening for cystic fibrosis and haemoglobinopathies: A sociotechnical analysis
Journal Article

Economic implications of newborn screening for cystic fibrosis: A cost of illness retrospective cohort study
Journal Article

Faces disappearing: The implications of cystic fibrosis screening

+