To tell or not to tell: barriers and facilitators in family communication about genetic risk.

PubWeight™: 2.17‹?› | Rank: Top 2%

🔗 View Article (PMID 12974737)

Published in Clin Genet on October 01, 2003

Authors

K Forrest1, S A Simpson, B J Wilson, E R van Teijlingen, L McKee, N Haites, E Matthews

Author Affiliations

1: Department of Public Health, University of Aberdeen, Medical School, Foresterhill, Aberdeen, UK. k.forrest@abdn.ac.uk

Articles citing this

Letting the family know: balancing ethics and effectiveness when notifying relatives about genetic testing for a familial disorder. J Med Genet (2005) 1.66

Genetic testing in asymptomatic minors: background considerations towards ESHG Recommendations. Eur J Hum Genet (2009) 1.58

Factors determining dissemination of results and uptake of genetic testing in families with known BRCA1/2 mutations. Genet Test (2008) 1.46

Communicating genetic risk information within families: a review. Fam Cancer (2010) 1.26

A place for genetic uncertainty: parents valuing an unknown in the meaning of disease. Soc Sci Med (2007) 1.11

Genetic risk communication: experiences of adolescent girls and young women from families with fragile X syndrome. J Genet Couns (2009) 1.10

Hereditary nonpolyposis colorectal cancer family members' perceptions about the duty to inform and health professionals' role in disseminating genetic information. Genet Test (2005) 1.05

Living at risk: concealing risk and preserving hope in Huntington disease. J Genet Couns (2007) 1.02

A whisper-game perspective on the family communication of DNA-test results: a retrospective study on the communication process of BRCA1/2-test results between proband and relatives. Fam Cancer (2011) 1.01

Communicating genetic information in the family: the familial relationship as the forgotten factor. J Med Ethics (2007) 1.01

Factors influencing intrafamilial communication of hereditary breast and ovarian cancer genetic information. Eur J Hum Genet (2009) 0.99

The role of disease perceptions and results sharing in psychological adaptation after genetic susceptibility testing: the REVEAL Study. Eur J Hum Genet (2010) 0.98

The right not to know: the case of psychiatric disorders. J Med Ethics (2011) 0.97

Testing personalized medicine: patient and physician expectations of next-generation genomic sequencing in late-stage cancer care. Eur J Hum Genet (2013) 0.96

Disclosure of genetic information within families. Am J Nurs (2009) 0.95

Predictors of decision making in families at risk for inherited breast/ovarian cancer. Health Psychol (2009) 0.94

Parenting through genetic uncertainty: themes in the disclosure of breast cancer risk information to children. Genet Test Mol Biomarkers (2011) 0.93

Risk perception and cancer worries in families at increased risk of familial breast/ovarian cancer. Psychooncology (2008) 0.93

Pre-symptomatic genetic testing for inherited cardiac conditions: a qualitative exploration of psychosocial and ethical implications. Eur J Hum Genet (2013) 0.91

Disclosure decisions among pregnant women who received donor oocytes: a phenomenological study. Fertil Steril (2006) 0.91

Examining the family-centred approach to genetic testing and counselling among UK Pakistanis: a community perspective. J Community Genet (2012) 0.90

Perceived intrafamily melanoma risk communication. Cancer Nurs (2009) 0.90

A family genetic risk communication framework: guiding tool development in genetics health services. J Community Genet (2013) 0.90

Role of parenting relationship quality in communicating about maternal BRCA1/2 genetic test results with children. J Genet Couns (2008) 0.90

Health-care professionals' responsibility to patients' relatives in genetic medicine: a systematic review and synthesis of empirical research. Genet Med (2015) 0.90

Informing relatives about their hereditary or familial cancer risk: study protocol for a randomized controlled trial. Trials (2014) 0.87

Disclosing the disclosure: factors associated with communicating the results of genetic susceptibility testing for Alzheimer's disease. J Health Commun (2009) 0.87

Recruiting terminally ill patients into non-therapeutic oncology studies: views of health professionals. BMC Med Ethics (2012) 0.87

Unpacking the blockers: understanding perceptions and social constraints of health communication in hereditary breast ovarian cancer (HBOC) susceptibility families. J Genet Couns (2011) 0.85

Men in the women's world of hereditary breast and ovarian cancer--a systematic review. Fam Cancer (2009) 0.84

Family perspectives in lynch syndrome becoming a family at risk, patterns of communication and influence on relations. Hered Cancer Clin Pract (2012) 0.84

Avoidance as a strategy of (not) coping: qualitative interviews with carers of Huntington's Disease patients. BMC Fam Pract (2005) 0.83

Improving family communication after a new genetic diagnosis: a randomised controlled trial of a genetic counselling intervention. BMC Med Genet (2014) 0.82

Factors associated with experiences of genetic discrimination among individuals at risk for Huntington disease. Am J Med Genet B Neuropsychiatr Genet (2010) 0.82

Attitudes of physicians and patients towards disclosure of genetic information to spouse and first-degree relatives: a case study from Turkey. BMC Med Ethics (2014) 0.82

Participant use and communication of findings from exome sequencing: a mixed-methods study. Genet Med (2015) 0.82

Exploring resources for intrafamilial communication of cancer genetic risk: we still need to talk. Eur J Hum Genet (2013) 0.82

Family physicians' management of genetic aspects of a cardiac disease: a scenario-based study from slovenia. Balkan J Med Genet (2014) 0.81

Disclosing cancer genetic information within families: perspectives of counselees and their at-risk relatives. Fam Cancer (2010) 0.80

How communication of genetic information within the family is addressed in genetic counselling: a systematic review of research evidence. Eur J Hum Genet (2015) 0.80

Knowledge, attitudes, and beliefs of Arab-American women regarding inherited cancer risk. J Genet Couns (2012) 0.80

Disclosing Genetic Information to Family Members About Inherited Cardiac Arrhythmias: An Obligation or a Choice? J Genet Couns (2014) 0.79

Women's satisfaction with genetic counseling for hereditary breast-ovarian cancer: psychological aspects. Am J Med Genet A (2004) 0.78

Breast Cancer Risk Perceptions among Relatives of Women with Uninformative Negative BRCA1/2 Test Results: The Moderating Effect of the Amount of Shared Information. J Genet Couns (2015) 0.78

Breast cancer in the young: role of the geneticist. J Thorac Dis (2013) 0.78

Support Seeking or Familial Obligation: An Investigation of Motives for Disclosing Genetic Test Results. Health Commun (2015) 0.78

Genetics: breast cancer as an exemplar. Nurs Clin North Am (2009) 0.78

Life experiences of individuals with hereditary hemorrhagic telangiectasia and disclosing outside the family: a qualitative analysis. J Community Genet (2015) 0.76

Accuracy of recall of information about a cancer-predisposing BRCA1/2 gene mutation among patients and relatives. Eur J Hum Genet (2014) 0.76

Modeling the dyadic effects of parenting, stress, and coping on parent-child communication in families tested for hereditary breast-ovarian cancer risk. Fam Cancer (2016) 0.75

Interest of individuals from BRCA families to participate in research studies focused on male BRCA carriers. Fam Cancer (2013) 0.75

Psychosocial and Clinical Factors Associated with Family Communication of Cancer Genetic Test Results among Women Diagnosed with Breast Cancer at a Young Age. J Genet Couns (2016) 0.75

The impact of participation in genetic research for families with cleft lip with and without cleft palate: a qualitative study. J Community Genet (2014) 0.75

A tale worth telling: the impact of the diagnosis experience on disclosure of genetic disorders. J Intellect Disabil Res (2014) 0.75

A novel approach to screening for familial hypercholesterolemia in a large public venue. J Community Genet (2016) 0.75

Nursing advocacy in a postgenomic age. Nurs Clin North Am (2009) 0.75

What women think: cancer causal attributions in a diverse sample of women. J Psychosoc Oncol (2015) 0.75

Approaching confidentiality at a familial level in genomic medicine: a focus group study with healthcare professionals. BMJ Open (2017) 0.75

Beyond individualism: Is there a place for relational autonomy in clinical practice and research? Clin Ethics (2017) 0.75

Articles by these authors

Multifactorial analysis of differences between sporadic breast cancers and cancers involving BRCA1 and BRCA2 mutations. J Natl Cancer Inst (1998) 6.06

Presenting risk information--a review of the effects of "framing" and other manipulations on patient outcomes. J Health Commun (2001) 4.54

Eliciting public preferences for healthcare: a systematic review of techniques. Health Technol Assess (2001) 4.31

Effect of B vitamins and genetics on success of in-vitro fertilisation: prospective cohort study. Lancet (2006) 3.01

Adolescent and young adult tobacco prevention and cessation: current status and future directions. Tob Control (2003) 2.85

The effectiveness of one-to-one risk communication interventions in health care: a systematic review. Med Decis Making (2000) 2.68

Climate forcings in the industrial era. Proc Natl Acad Sci U S A (1998) 2.29

ATM mutations and phenotypes in ataxia-telangiectasia families in the British Isles: expression of mutant ATM and the risk of leukemia, lymphoma, and breast cancer. Am J Hum Genet (1998) 2.06

Low dose rate teletherapy and tumour response. Australas Radiol (1993) 1.94

Tremorgenic toxin from Penicillium cyclopium grown on food materials. Nature (1968) 1.90

Audit: the third clinical science? Qual Health Care (1992) 1.87

Glycolate Metabolism and Excretion by Chlamydomonas reinhardtii. Plant Physiol (1986) 1.85

Testing diphenylethylamine compounds for analgesic action. J Physiol (1945) 1.82

When and how to assess fast-changing technologies: a comparative study of medical applications of four generic technologies. Health Technol Assess (1997) 1.79

Allelic and locus heterogeneity in inherited venous malformations. Hum Mol Genet (1999) 1.78

A community based investigation of the association between cannabis use, injuries and accidents. J Psychopharmacol (2005) 1.77

Communication about risk: diversity among primary care professionals. Fam Pract (1998) 1.72

Activation of coagulation and angiogenesis in cancer: immunohistochemical localization in situ of clotting proteins and vascular endothelial growth factor in human cancer. Am J Pathol (1998) 1.65

AIDS specialist versus generalist ambulatory care for advanced HIV infection and impact on hospital use. Med Care (1994) 1.64

The pathology of familial breast cancer: histological features of cancers in families not attributable to mutations in BRCA1 or BRCA2. Clin Cancer Res (2000) 1.62

Familial breast cancer: an investigation into the outcome of treatment for early stage disease. Fam Cancer (2001) 1.62

Environmental risk factors for Parkinson's disease and parkinsonism: the Geoparkinson study. Occup Environ Med (2007) 1.60

Prothrombotic genotypes are not associated with pre-eclampsia and gestational hypertension: results from a large population-based study and systematic review. Thromb Haemost (2002) 1.52

Most germ-line mutations in the nevoid basal cell carcinoma syndrome lead to a premature termination of the PATCHED protein, and no genotype-phenotype correlations are evident. Am J Hum Genet (1997) 1.50

Mutations in the peripheral myelin genes and associated genes in inherited peripheral neuropathies. Hum Mutat (1999) 1.46

Toxins other than aflatoxins produced by Aspergillus flavus. Bacteriol Rev (1966) 1.46

Causative fungus agent of leucoencephalomalacia in equine animals. Vet Rec (1971) 1.44

A new approach to prenatal cystic fibrosis carrier screening. J Med Genet (1993) 1.40

Variation in mortality from ischaemic heart disease between England and Scotland. Q J Med (1987) 1.40

GATA3 inhibits breast cancer growth and pulmonary breast cancer metastasis. Oncogene (2009) 1.37

Determinants of skilled birth attendants for delivery in Nepal. Kathmandu Univ Med J (KUMJ) (2012) 1.37

Bestrophin gene mutations in patients with Best vitelliform macular dystrophy. Genomics (1999) 1.29

Bioproduction and purification of rubratoxin B. Appl Microbiol (1968) 1.28

Major problems and key issues in Maternal Health in Nepal. Kathmandu Univ Med J (KUMJ) (2008) 1.28

Factors associated with intention to undergo annual prostate cancer screening among African American men in Philadelphia. Cancer (1996) 1.27

Patterns of ambulatory care for AIDS patients, and association with emergency room use. Health Serv Res (1994) 1.26

High-frequency jet ventilation in the early management of respiratory distress syndrome is associated with a greater risk for adverse outcomes. Pediatrics (1996) 1.26

Effects of hypocarbia on the development of cystic periventricular leukomalacia in premature infants treated with high-frequency jet ventilation. Pediatrics (1996) 1.25

Communication about risk: the responses of primary care professionals to standardizing the 'language of risk' and communication tools. Fam Pract (1998) 1.25

The AIDS-defining diagnosis and subsequent complications: a survival-based severity index. J Acquir Immune Defic Syndr (1991) 1.22

The highly related DEAD box RNA helicases p68 and p72 exist as heterodimers in cells. Nucleic Acids Res (2003) 1.22

Investigation of reported aflatoxin production by fungi outside the Aspergillus flavus group. Appl Microbiol (1968) 1.22

Production, isolation, and preliminary toxicity studies of brevianamide A from cultures of Penicillium viridicatum. Appl Microbiol (1973) 1.22

Vasectomy: immunologic effects in rhesus monkeys and men. Fertil Steril (1974) 1.17

Residual ataxia telangiectasia mutated protein function in cells from ataxia telangiectasia patients, with 5762ins137 and 7271T-->G mutations, showing a less severe phenotype. J Biol Chem (2001) 1.16

Two-dimensional echocardiographic diagnosis of intracardiac masses in infancy. J Am Coll Cardiol (1984) 1.15

Avoidance of pesticides by untrained mosquitofish, Gambusia affinis. Bull Environ Contam Toxicol (1972) 1.15

Preimplantation diagnosis or chorionic villus biopsy? Women's attitudes and preferences. Hum Reprod (1993) 1.12

Psychosocial status of young adult survivors of childhood cancer: a survey. Med Pediatr Oncol (1989) 1.11

Telephone advice scheme criticised. BMJ (1998) 1.08

Cognitive performance in UK sample of presymptomatic people carrying the gene for Huntington's disease. J Med Genet (1995) 1.06

Cost-effectiveness of intensive care for respiratory failure patients. Crit Care Med (1980) 1.06

Gene-environment interactions in parkinsonism and Parkinson's disease: the Geoparkinson study. Occup Environ Med (2007) 1.05

Guidelines for follow-up of women at high risk for inherited breast cancer: consensus statement from the Biomed 2 Demonstration Programme on Inherited Breast Cancer. Dis Markers (1999) 1.05

Cannabis use, cognitive performance and mood in a sample of workers. J Psychopharmacol (2005) 1.05

Mechanical ventilation in preterm infants: neurosonographic and developmental studies. Pediatrics (1992) 1.02

Genetic services for hereditary breast/ovarian and colorectal cancers - physicians' awareness, use and satisfaction. Community Genet (2008) 1.01

Confirmation by chemical synthesis of the structure of 4-ipomeanol, a lung-toxic metabolite of the sweet potato, Ipomoea batatas. Nat New Biol (1972) 1.01

Virus-associated deficiencies in the mitogen reactivity in celebes black macaques (Macaca nigra). Clin Immunol Immunopathol (1985) 1.01

Prevalence of Bartonella species, Rickettsia felis, haemoplasmas and the Ehrlichia group in the blood of cats and fleas in eastern Australia. Aust Vet J (2010) 1.00

A sequence-ready high-resolution physical map of the best macular dystrophy gene region in 11q12-q13. Genomics (1997) 0.99

Dimethylaminoethyl 2,2-diphenylvalerate HCl (SKF 525-A)--in vivo and in vitro effects of metabolism by rat liver microsomes--formation of an oxygenated complex. Biochem Pharmacol (1972) 0.99

Can paternalism be modernised? J Med Ethics (1986) 0.99

Ethical, social and economic issues in familial breast cancer: a compilation of views from the E.C. Biomed II Demonstration Project. Dis Markers (1999) 0.98

Differential deficits in expression recognition in gene-carriers and patients with Huntington's disease. Neuropsychologia (2003) 0.98

Transfection of human skeletal muscle cells with SV40 large T antigen gene coupled to a metallothionein promoter. Ann Neurol (1986) 0.98

Distribution of type D retrovirus sequences in tissues of macaques with simian acquired immune deficiency and retroperitoneal fibromatosis. Virology (1986) 0.96

Psychological risk factors for chronic post-surgical pain after inguinal hernia repair surgery: a prospective cohort study. Eur J Pain (2012) 0.95

Superoxide dismutase mutations in an unselected cohort of Scottish amyotrophic lateral sclerosis patients. J Med Genet (1995) 0.95

Glycosidase activity in the excretory-secretory products of the liver fluke, Fasciola hepatica. Parasitology (2004) 0.94

Young people's experiences of growing up in a family affected by Huntington's disease. Clin Genet (2007) 0.94

Efficacy of early diagnosis and treatment in women with a family history of breast cancer. European Familial Breast Cancer Collaborative Group. Dis Markers (1999) 0.94

Patterns of Medicaid expenditures after AIDS diagnosis. Health Care Financ Rev (1994) 0.93

Improving breast screening uptake: persuading initial non-attenders to attend. J Med Screen (1994) 0.93

On the significance of drug-induced spectral changes in liver microsomes. Biochem Soc Symp (1972) 0.92

Partial trisomy 7 (q32----qter) syndrome in two children. J Med Genet (1986) 0.92

Dystrophin analysis in clonal myoblasts derived from a Duchenne muscular dystrophy carrier. Am J Hum Genet (1989) 0.92

Purification and characterization of aspartate aminotransferase isoenzymes from carrot suspension cultures. Plant Physiol (1990) 0.92

Sex differentials in survivorship and the customary treatment of infants and children. Med Anthropol (1984) 0.92

Effects of 4-ipomeanol, a product from mold-damaged sweet potatoes, on the bovine lung. Vet Pathol (1978) 0.91

Lung-toxic furanoterpenoids produced by sweet potatoes (Ipomoea batatas) following microbial infection. Biochim Biophys Acta (1974) 0.91

Prognostic factors of spinal cord stimulation for chronic back and leg pain. Neurosurgery (1995) 0.91

In vitro studies on the metabolic activation of the pulmonary toxin, 4-ipomeanol, by rat lung and liver microsomes. J Pharmacol Exp Ther (1978) 0.91

Haemochromatosis mutations in North-East Scotland. Br J Haematol (1999) 0.90

Neurologic disease of fungal origin in three herds of cattle. J Am Vet Med Assoc (1981) 0.90

Isolation of rabbit anti-rhesus lymphocyte antibody using a specific immunoadsorbent. J Immunol (1971) 0.90

Cancer genetics services in Europe. Dis Markers (1999) 0.90

Steroid responsive polyneuropathy in a family with a novel myelin protein zero mutation. J Neurol Neurosurg Psychiatry (2000) 0.90

Neurodevelopment of preterm infants: neonatal neurosonographic and serum bilirubin studies. Pediatrics (1992) 0.89

Adoption, genetic disease, and DNA. Arch Dis Child (1993) 0.89

Antenatal cystic fibrosis carrier screening--whether, when and how? Paediatr Perinat Epidemiol (1993) 0.89

Doppler ultrasound measurement of cardiac output. Br J Hosp Med (1984) 0.89

The Bristol Stress and Health Study: accidents, minor injuries and cognitive failures at work. Occup Med (Lond) (2003) 0.89

Genetic nurse counsellors can be an acceptable and cost-effective alternative to clinical geneticists for breast cancer risk genetic counselling. Evidence from two parallel randomised controlled equivalence trials. Br J Cancer (2006) 0.88

Relationship of aflatoxin to epizootics of toxic hepatitis among animals in southern United States. Am J Vet Res (1967) 0.88

Risk estimation as a decision-making tool for genetic analysis of the breast cancer susceptibility genes. EC Demonstration Project on Familial Breast Cancer. Dis Markers (1999) 0.87

Ca2+ release by inositol 1,4,5-trisphosphate is blocked by the K(+)-channel blockers apamin and tetrapentylammonium ion, and a monoclonal antibody to a 63 kDa membrane protein: reversal of blockade by K+ ionophores nigericin and valinomycin and purification of the 63 kDa antibody-binding protein. Biochem J (1994) 0.87

Perilla ketone: a potent lung toxin from the mint plant, Perilla frutescens Britton. Science (1977) 0.87

A simple rapid method for layering blood on Ficoll-Isopaque gradients. J Immunol Methods (1975) 0.87