Genetic information: Special or not? Responses from focus groups with members of a health maintenance organization

Diergaarde, Brenda; Bowen, Deborah J.; Ludman, Evette; Culver, Julie O.; Press, Nancy; Burke, Wylie

doi:10.1002/ajmg.a.31621

Cited by 16 publications

(14 citation statements)

References 17 publications

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“…In a study on (genetic) health information, the general population expressed a right to choose whether to know health risk information and to control who else knows [Diergaarde et al, 2007]. Another argument raised in our focus groups was that a result might be meaningful to them ''at some unforeseen point in time'' and respondents did not want to have the feeling they ''missed'' it.…”

Section: Discussion Information Preferencesmentioning

confidence: 98%

Communication of biobanks' research results: What do (potential) participants want?

Meulenkamp

Gevers

Bovenberg

et al. 2010

American J of Med Genetics Pt A

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The aim of this study was to investigate (potential) research participants' (a) information preferences with regard to receiving biobanks' genetic research results, and (b) attitudes towards the duties of researchers to communicate research results. A total group of 1,678 was analyzed, consisting of a sample of the general Dutch population (N=1,163) and patients with asthma, rhinitis, and thrombosis (N=515) who completed a survey including six fictitious genetic research results each presented as aggregate and individual result, varied for treatability and kind of disease. Five questions assessed attitudes towards researchers' duties to communicate research results. Additionally, background characteristics were measured. A majority of the respondents wanted to receive aggregate results as well as individual results. A small majority (59%) held the view that researchers should communicate individual results with no health consequences. One third agreed with an information duty only when treatment is available. A preference for individual results and an attitude in favor of communicating results were both associated with belonging to the general Dutch population rather than being a patient, wanting to learn about own health as the reason for biobank-participation, a monitoring coping style, a general desire for health information, perceived meaningfulness of genetic information and no anticipated anxiousness. A sizable majority of respondents showed a high information preference for individual results, even when it is unclear that treatment is available. Fewer were of the opinion that researchers should make this possible. For their communication policy biobanks should take notice of (potential) participants' high information preferences and expectations.

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Section: Discussion Information Preferencesmentioning

confidence: 98%

Communication of biobanks' research results: What do (potential) participants want?

Meulenkamp

Gevers

Bovenberg

et al. 2010

American J of Med Genetics Pt A

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“…Others have used Template Analysis to code similar types of qualitative data. 19,[21][22][23] In Template Analysis, thematic categories are predetermined a priori according to the researchers' study goals (e.g., physicians' opinions of WHI and their counseling strategies around HT discontinuation). Categories are usually organized in a hierarchical fashion, with more global overarching themes encompassing more specific categories.…”

Section: Discussionmentioning

confidence: 99%

How the Women’s Health Initiative (WHI) Influenced Physicians’ Practice and Attitudes

et al. 2007

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BACKGROUND:The landmark Women's Health Initiative (WHI) Postmenopausal Hormone Therapy Trial published in 2002 showed that the health risks of combination hormone therapy (HT) with estrogen and progestin outweighed the benefits in healthy postmenopausal women. Dissemination of results had a major impact on prescriptions for, and physician beliefs about HT. No study has fully examined the influence of the widely publicized WHI on physicians' practice and attitudes or their opinions of the scientific evidence regarding HT; in addition, little is known about how physicians assist women in their decisions regarding HT. DESIGN AND PARTICIPANTS:We conducted in-depth telephone interviews with family practitioners, internists, and gynecologists from integrated health care delivery systems in Washington State (n=10 physicians) and Massachusetts (n=12 physicians). Our objectives were to obtain qualitative information from these physicians to understand their perspectives on use of HT, the scientific evidence regarding its risks and benefits, and counseling strategies around HT use and discontinuation.APPROACH: We used Template Analysis to code transcribed telephone interviews and identify themes. RESULTS:Physicians were conflicted about the WHI results and its implications. Seven themes identified from in-depth interviews suggested that the WHI (1) was a ground-breaking study that changed clinical practice, including counseling; (2) was not applicable to the full range of patients seen in clinical practice; (3) raised concerns over the impact of publicized health information on women; (4) created uncertainty about the risks and benefits of HT; (5) called for the use of decision aids; (6) influenced discontinuation strategies; and (7) provided an opportunity to discuss healthy lifestyle options with patients. As a result of the WHI, physicians reported they no longer prescribe HT for prevention and were more likely to suggest discontinuation, although many felt women should be in charge of the HT decision.CONCLUSIONS: Physicians varied in their opinions of HT and the scientific evidence (positive and negative). Whereas the WHI delineated the risks and benefits of HT, physicians reported that decision aids are needed to guide discussions with women about menopause and HT. Better guidance at the time of WHI study publication might have been valuable to ensure best practices.

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“…39,40 This finding may add support to the arguments against privileging genetic information as some experts have argued. 41,42 …”

Section: Commentmentioning

confidence: 99%

Public Preferences About Secondary Uses of Electronic Health Information

et al. 2013

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Genetic information: Special or not? Responses from focus groups with members of a health maintenance organization

Cited by 16 publications

References 17 publications

Communication of biobanks' research results: What do (potential) participants want?

Communication of biobanks' research results: What do (potential) participants want?

How the Women’s Health Initiative (WHI) Influenced Physicians’ Practice and Attitudes

Public Preferences About Secondary Uses of Electronic Health Information

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