ArticleJournal of genetic counseling2011
Attitudes and beliefs of African-Americans toward genetics, genetic testing, and sickle cell disease education and awareness.
Article in Journal of genetic counseling, 2011. The graph could read no effect estimate from its abstract, so it casts no vote on the map. It is linked to trial NCT02326597 (Comparative Effectiveness of a Decision Aid for Therapeutic Options in Sickle Cell Disease), which is not on this map. Cited by 32 papers, 1 of them a synthesis that pooled it.
What it found
Each row is one number read from the abstract, on the scale the paper reported it, with its interval. Left of the dashed line favours the treatment, right favours the comparator. Under each row is the sentence it came from. New to these charts? A ten-minute tutorial.
The abstract states no effect estimate the extractor could read, or names no intervention and outcome on the map, so this paper lights no cell and moves no belief. It is still indexed, cited and linked below.
The trial behind it
Trials whose registry record cites this paper, or whose number appears in the abstract. A trial that started after this paper was published is citing it as background, not reporting it.
Comparative Effectiveness of a Decision Aid for Therapeutic Options in Sickle Cell Disease
Who cites it
32 citing papers in PubMed, 1 synthesis or guideline pooled it.
- Racial and ethnic differences in knowledge and attitudes about genetic testing in the US: Systematic review.Journal of genetic counseling · 2019Pooled it
- Effect of Health Education Programme on the Knowledge of and Attitude about Sickle Cell Anaemia among Male Secondary School Students in the Jazan Region of Saudi Arabia: Health Policy Implications.BioMed research international · 2019Trial
- Perception of young adults with sickle cell disease or sickle cell trait about participation in the CHOICES randomized controlled trial.Journal of advanced nursing · 2016Trial
- Reproductive Health CHOICES for Young Adults with Sickle Cell Disease or Trait: Randomized Controlled Trial Outcomes over Two Years.Journal of genetic counseling · 2016Trial
- Reproductive health choices for young adults with sickle cell disease or trait: randomized controlled trial immediate posttest effects.Nursing researchTrial
- Sickle cell disease-related myths and misconceptions among tribal communities in India: a multi-state qualitative study.Journal of community genetics · 2026Article
- Apolipoprotein L1 Genetic Testing and Counseling Does Not Reduce Living Kidney Donors' Willingness to Donate : A Hybrid Type 2 Nonrandomized Controlled Trial.Clinical journal of the American Society of Nephrology : CJASN · 2026Article
- A pilot randomized controlled trial of the iPeer2Peer program in adolescents with sickle cell disease: A mixed method study.Journal of clinical and translational science · 2025Article
- International Society for Prenatal Diagnosis 2022 debate 3-Fetal genome sequencing should be offered to all pregnant patients.Prenatal diagnosis · 2023Article
- CHOICES for sickle cell reproductive health: A protocol of a randomized preconception intervention model for a single gene disorder.PloS one · 2023Article
- Sickle Cell Disease Knowledge and Reproductive Decisions: A Saudi Cross-Sectional Study.Patient preference and adherence · 2023Article
- Beliefs and willingness towards participating in genetic testing for depression in low-income and racial/ethnic minority mothers at-risk.Archives of psychiatric nursing · 2022Article
- Characteristics associated with the perceived likelihood to become parents among young adults with sickle cell disease or sickle cell trait in the USA.Journal of genetic counseling · 2022Article
- Developing community-based health education strategies with family history: Assessing the association between community resident family history and interest in health education.Social science & medicine (1982) · 2021Article
- Eliciting Willingness and Beliefs towards Participation in Genetic Psychiatric Testing in Black/African American Mothers at Risk for Depression.Behavioral sciences (Basel, Switzerland) · 2020Article
- Predictors of genetic beliefs toward cancer risk perceptions among adults in the United States: Implications for prevention or early detection.Journal of genetic counseling · 2020Article
- African American mothers' attitudes towards genetic testing in the InterGEN study.Journal of community genetics · 2020Article
- Sickle cell carriers' unmet information needs: Beyond knowing trait status.Journal of genetic counseling · 2019Article
- African American Living Donors' Attitudes About APOL1 Genetic Testing: A Mixed Methods Study.American journal of kidney diseases : the official journal of the National Kidney Foundation · 2018Article
- Identifying Factors Underlying the Decision for Sickle Cell Carrier Screening Among African Americans Within Middle Reproductive Age.Journal of genetic counseling · 2018Article
Corrections and comments
PubMed lists nothing against this paper. Absence here is not a guarantee, only a check that was made.
Authors and funding
5 authors.
Funding
Abstract
Research among African-Americans indicates this population perceives sickle cell (SCD) to be a serious disease and sickle cell trait (SCT) screening an important intervention. However, studies have consistently demonstrated a lower than desired uptake of SCD education, inadequate knowledge regarding personal and family trait status, and a low perceived susceptibility of giving birth to a child with the disease. We examined general attitudes and beliefs regarding genetics and genetic testing including prenatal testing and newborn screening; we used this information as the foundation to more specifically assess attitudes and beliefs regarding SCD and perceived barriers to SCD education and awareness. Thirty-five African-American adult men and women participated in one of four focus groups. Thematic analysis identified that both prenatal testing and newborn screening are acceptable forms of genetic testing. Based largely on their personal experiences, participants possessed an understanding of the natural progression of SCD but had a limited understanding of the inheritance and probable risk of giving birth to a child with the disease. Barriers to education and greater awareness of SCD were classified as personal, familial, and societal. Community based interventions focused on sharing the stories of individuals with first-hand experiences with SCD should be considered.
Indexed as
Identifiers
21748660What OpenQuestion holds
Registered trials
Read under generation 80e0d062 · epoch 390. Bibliography from PubMed, PubMed Central and OpenAlex; grants from NIH RePORTER; trial links from ClinicalTrials.gov; estimates, votes and beliefs from the OpenQuestion graph.