Social and cultural influences on genetic screening programme acceptability: A mixed-methods study of the views of adults, carriers, and family members living with thalassemia in the UK (Q89958096)

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scientific article published on 01 March 2020

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English	Social and cultural influences on genetic screening programme acceptability: A mixed-methods study of the views of adults, carriers, and family members living with thalassemia in the UK	scientific article published on 01 March 2020

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scholarly article

1 reference

Europe PubMed Central

PubMed publication ID

https://www.ebi.ac.uk/europepmc/webservices/rest/search?query=EXT_ID:32114710%20AND%20SRC:MED&resulttype=core&format=json

10 April 2020

Social and cultural influences on genetic screening programme acceptability: A mixed-methods study of the views of adults, carriers, and family members living with thalassemia in the UK (English)

1 reference

Europe PubMed Central

PubMed publication ID

https://www.ebi.ac.uk/europepmc/webservices/rest/search?query=EXT_ID:32114710%20AND%20SRC:MED&resulttype=core&format=json

10 April 2020

1 reference

based on heuristic

inferred from title

Felicity K. Boardman

1

1 reference

Europe PubMed Central

PubMed publication ID

https://www.ebi.ac.uk/europepmc/webservices/rest/search?query=EXT_ID:32114710%20AND%20SRC:MED&resulttype=core&format=json

10 April 2020

author name string

Corinna Clark

2

1 reference

Europe PubMed Central

PubMed publication ID

https://www.ebi.ac.uk/europepmc/webservices/rest/search?query=EXT_ID:32114710%20AND%20SRC:MED&resulttype=core&format=json

10 April 2020

Elsita Jungkurth

3

1 reference

Europe PubMed Central

PubMed publication ID

https://www.ebi.ac.uk/europepmc/webservices/rest/search?query=EXT_ID:32114710%20AND%20SRC:MED&resulttype=core&format=json

10 April 2020

Philip J Young

4

1 reference

Europe PubMed Central

PubMed publication ID

https://www.ebi.ac.uk/europepmc/webservices/rest/search?query=EXT_ID:32114710%20AND%20SRC:MED&resulttype=core&format=json

10 April 2020

publication date

1 March 2020

1 reference

Europe PubMed Central

PubMed publication ID

https://www.ebi.ac.uk/europepmc/webservices/rest/search?query=EXT_ID:32114710%20AND%20SRC:MED&resulttype=core&format=json

10 April 2020

Journal of Genetic Counseling

1 reference

Europe PubMed Central

PubMed publication ID

https://www.ebi.ac.uk/europepmc/webservices/rest/search?query=EXT_ID:32114710%20AND%20SRC:MED&resulttype=core&format=json

10 April 2020

Balancing autonomy and responsibility: the ethics of generating and disclosing genetic information.

1 reference

https://pubmed.ncbi.nlm.nih.gov/32114710

12 December 2020

based on heuristic

inferred from PubMed ID database lookup

Attitudes towards prenatal diagnosis and termination of pregnancy for thalassaemia in pregnant Pakistani women in the North of England

1 reference

https://pubmed.ncbi.nlm.nih.gov/32114710

12 December 2020

based on heuristic

inferred from PubMed ID database lookup

A qualitative study on the experiences of mothers caring for their children with thalassemia in Athens, Greece

1 reference

https://pubmed.ncbi.nlm.nih.gov/32114710

12 December 2020

based on heuristic

inferred from PubMed ID database lookup

How does the mode of inheritance of a genetic condition influence families? A study of guilt, blame, stigma, and understanding of inheritance and reproductive risks in families with X-linked and autosomal recessive diseases

1 reference

https://pubmed.ncbi.nlm.nih.gov/32114710

12 December 2020

based on heuristic

inferred from PubMed ID database lookup

'Rakter dosh'--corrupting blood: The challenges of preventing thalassemia in Bengal, India

1 reference

https://pubmed.ncbi.nlm.nih.gov/32114710

12 December 2020

based on heuristic

inferred from PubMed ID database lookup

The influence of faith and religion and the role of religious and community leaders in prenatal decisions for sickle cell disorders and thalassaemia major

1 reference

https://pubmed.ncbi.nlm.nih.gov/32114710

12 December 2020

based on heuristic

inferred from PubMed ID database lookup

Attitudes to prenatal testing and termination of pregnancy for fetal abnormality: a comparison of white and Pakistani women in the UK.

1 reference

https://pubmed.ncbi.nlm.nih.gov/32114710

12 December 2020

based on heuristic

inferred from PubMed ID database lookup

Attitudes towards genetic diagnosis in Pakistan: a survey of medical and legal communities and parents of thalassemic children

1 reference

https://pubmed.ncbi.nlm.nih.gov/32114710

12 December 2020

based on heuristic

inferred from PubMed ID database lookup

Premarital screening for thalassemia and sickle cell disease in Saudi Arabia

1 reference

https://pubmed.ncbi.nlm.nih.gov/32114710

12 December 2020

based on heuristic

inferred from PubMed ID database lookup

Premarital screening for beta-thalassaemia in Southern Iran: options for improving the programme.

1 reference

https://pubmed.ncbi.nlm.nih.gov/32114710

12 December 2020

based on heuristic

inferred from PubMed ID database lookup

Cultural variation in values attached to informed choice in the context of prenatal diagnosis

1 reference

https://pubmed.ncbi.nlm.nih.gov/32114710

12 December 2020

based on heuristic

inferred from PubMed ID database lookup

Informed choice to undergo prenatal screening for thalassemia: a description of written information given to pregnant women in Europe and beyond

1 reference

https://pubmed.ncbi.nlm.nih.gov/32114710

12 December 2020

based on heuristic

inferred from PubMed ID database lookup

Awareness among parents of children with thalassemia major

1 reference

https://pubmed.ncbi.nlm.nih.gov/32114710

12 December 2020

based on heuristic

inferred from PubMed ID database lookup

Carrier screening for beta-thalassaemia: a review of international practice

1 reference

https://pubmed.ncbi.nlm.nih.gov/32114710

12 December 2020

based on heuristic

inferred from PubMed ID database lookup

Offering antenatal sickle cell and thalassaemia screening to pregnant women in primary care: a qualitative study of women's experiences and expectations of participation

1 reference

https://pubmed.ncbi.nlm.nih.gov/32114710

12 December 2020

based on heuristic

inferred from PubMed ID database lookup

Risk and reproductive decisions: British Pakistani couples' responses to genetic counselling

1 reference

https://pubmed.ncbi.nlm.nih.gov/32114710

12 December 2020

based on heuristic

inferred from PubMed ID database lookup

At-risk marriages after compulsory premarital testing and counseling for β-thalassemia and sickle cell disease in Saudi Arabia, 2005-2006

1 reference

https://pubmed.ncbi.nlm.nih.gov/32114710

12 December 2020

based on heuristic

inferred from PubMed ID database lookup

Anticipated stigma and quality of life among people living with chronic illnesses

1 reference

https://pubmed.ncbi.nlm.nih.gov/32114710

12 December 2020

based on heuristic

inferred from PubMed ID database lookup

Awareness among parents of β-thalassemia major patients, regarding prenatal diagnosis and premarital screening.

1 reference

https://pubmed.ncbi.nlm.nih.gov/32114710

12 December 2020

based on heuristic

inferred from PubMed ID database lookup

Attitudes towards prenatal testing and termination of pregnancy in British Pakistani parents and relatives of children with recessive conditions in the UK.

1 reference

https://pubmed.ncbi.nlm.nih.gov/32114710

12 December 2020

based on heuristic

inferred from PubMed ID database lookup

Examining the family-centred approach to genetic testing and counselling among UK Pakistanis: a community perspective

1 reference

https://pubmed.ncbi.nlm.nih.gov/32114710

12 December 2020

based on heuristic

inferred from PubMed ID database lookup

Attitudes towards prenatal diagnosis and abortion in a multi-ethnic country: a survey among parents of children with thalassaemia major in Malaysia.

1 reference

https://pubmed.ncbi.nlm.nih.gov/32114710

12 December 2020

based on heuristic

inferred from PubMed ID database lookup

"He didn't say that thalassaemia might come up" - β-thalassaemia carriers' experiences and attitudes

1 reference

https://pubmed.ncbi.nlm.nih.gov/32114710

12 December 2020

based on heuristic

inferred from PubMed ID database lookup

Public knowledge of and attitudes toward genetics and genetic testing

1 reference

https://pubmed.ncbi.nlm.nih.gov/32114710

12 December 2020

based on heuristic

inferred from PubMed ID database lookup

Hemoglobinopathy carrier prevalence in the United Arab Emirates: first analysis of the Dubai Health Authority premarital screening program results.

1 reference

https://pubmed.ncbi.nlm.nih.gov/32114710

12 December 2020

based on heuristic

inferred from PubMed ID database lookup

"Suddenly Having two Positive People who are Carriers is a Whole New Thing" - Experiences of Couples Both Identified as Carriers of Cystic Fibrosis Through a Population-Based Carrier Screening Program in Australia

1 reference

https://pubmed.ncbi.nlm.nih.gov/32114710

12 December 2020

based on heuristic

inferred from PubMed ID database lookup

Potential Psychosocial Risks of Sequencing Newborns

1 reference

https://pubmed.ncbi.nlm.nih.gov/32114710

12 December 2020

based on heuristic

inferred from PubMed ID database lookup

Anticipated stigma and blameless guilt: Mothers' evaluation of life with the sex-linked disorder, hypohidrotic ectodermal dysplasia (XHED).

1 reference

https://pubmed.ncbi.nlm.nih.gov/32114710

12 December 2020

based on heuristic

inferred from PubMed ID database lookup

Decisions Regarding Pregnancy Termination Due to β-Thalassemia Major: a Mixed-Methods Study in Sistan and Baluchestan, Iran.

1 reference

https://pubmed.ncbi.nlm.nih.gov/32114710

12 December 2020

based on heuristic

inferred from PubMed ID database lookup

The era of comparable life expectancy between thalassaemia major and intermedia: Is it time to revisit the major-intermedia dichotomy?

1 reference

https://pubmed.ncbi.nlm.nih.gov/32114710

12 December 2020

based on heuristic

inferred from PubMed ID database lookup

Population screening for spinal muscular atrophy: A mixed methods study of the views of affected families.

1 reference

https://pubmed.ncbi.nlm.nih.gov/32114710

12 December 2020

based on heuristic

inferred from PubMed ID database lookup

Cure for thalassemia major - from allogeneic hematopoietic stem cell transplantation to gene therapy

1 reference

https://pubmed.ncbi.nlm.nih.gov/32114710

12 December 2020

based on heuristic

inferred from PubMed ID database lookup

Preconception carrier screening and prenatal diagnosis in thalassemia and hemoglobinopathies: challenges and future perspectives

1 reference

https://pubmed.ncbi.nlm.nih.gov/32114710

12 December 2020

based on heuristic

inferred from PubMed ID database lookup

Factors associated with continuing emergence of β-thalassemia major despite prenatal testing: a cross-sectional survey.

1 reference

https://pubmed.ncbi.nlm.nih.gov/32114710

12 December 2020

based on heuristic

inferred from PubMed ID database lookup

Survey on knowledge, attitude, acceptance and related factors among pregnant women in Thailand regarding antenatal thalassaemia screening.

1 reference

https://pubmed.ncbi.nlm.nih.gov/32114710

12 December 2020

based on heuristic

inferred from PubMed ID database lookup

Designing expanded carrier screening panels: results of a qualitative study with European geneticists

1 reference

https://pubmed.ncbi.nlm.nih.gov/32114710

12 December 2020

based on heuristic

inferred from PubMed ID database lookup

How do genetically disabled adults view selective reproduction? Impairment, identity, and genetic screening

1 reference

https://pubmed.ncbi.nlm.nih.gov/32114710

12 December 2020

based on heuristic

inferred from PubMed ID database lookup

"I didn't take it too seriously because I'd just never heard of it": Experiential knowledge and genetic screening for thalassaemia in the UK

1 reference

https://pubmed.ncbi.nlm.nih.gov/32114710

12 December 2020

based on heuristic

inferred from PubMed ID database lookup

Preventing lives affected by hemophilia: A mixed methods study of the views of adults with hemophilia and their families toward genetic screening

1 reference

https://pubmed.ncbi.nlm.nih.gov/32114710

12 December 2020

based on heuristic

inferred from PubMed ID database lookup

Practical mixed methods strategies used to integrate qualitative and quantitative methods in community-based primary health care research

1 reference

https://pubmed.ncbi.nlm.nih.gov/32114710

12 December 2020

based on heuristic

inferred from PubMed ID database lookup

Attitudes of people with inherited retinal conditions toward gene editing technology

1 reference

https://pubmed.ncbi.nlm.nih.gov/32114710

12 December 2020

based on heuristic

inferred from PubMed ID database lookup

Preconception and antenatal carrier screening for genetic conditions: The critical role of general practitioners

1 reference

https://pubmed.ncbi.nlm.nih.gov/32114710

12 December 2020

based on heuristic

inferred from PubMed ID database lookup

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