Minors and informed consent in carrier testing: a survey of European clinical geneticists

Objectives: To explore the attitudes of a sample of pregnant women in the UK towards informed consent for antenatal thalassaemia carrier testing and perceived pre-test information needs for such testing. Setting: The study was conducted in two cities in the North of England, where participants were recruited via Midwifery and Genetic services. Method: In all, 110 Pakistani women tested and not found to be thalassaemia carriers completed a questionnaire, 14 of whom were also interviewed. Thirty-six women identified as carriers or possible carriers completed a questionnaire and were interviewed. The questionnaires assessed whether women were aware that they had been tested for thalassaemia carrier status, whether they were asked for their consent for such testing, and their pre-test information preferences. The interviews explored women's beliefs about 'informed consent' in more depth. Results: Women had received little or no pre-test information and said that they would have preferred to be informed that they were being tested, but they did not expect, or express a desire, to be asked for their informed consent. Conclusion: While information was important to women, consenting was not. Overall, women discussed 'information' and 'consent' as two separate issues, thus challenging assumptions around the term informed consent. Women wanted pre-test information because they wanted to know more about the tests that they would be having, not to use it to make decisions about whether to have the tests.

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What do Patients Prefer: Informed Consent Models for Genetic Carrier Testing

Journal of Genetic Counseling ◽

10.1007/s10897-007-9094-3 ◽

2007 ◽

Vol 16 (4) ◽

pp. 539-550 ◽

Cited By ~ 32

Author(s):

K. E. Ormond ◽

M. Iris ◽

S. Banuvar ◽

J. Minogue ◽

G. J. Annas ◽

...

Keyword(s):

Informed Consent ◽

Carrier Testing

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Equipoise, Informed Consent and Clinical Research

Perspectives on Swallowing and Swallowing Disorders (Dysphagia) ◽

10.1044/sasd11.2.22 ◽

2002 ◽

Vol 11 (2) ◽

pp. 22-23

Author(s):

Lynne C. Brady Wagner

Keyword(s):

Informed Consent ◽

Clinical Research

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Tools and Resources: Web Sites of Interest

Guides Newsletter ◽

10.1001/amaguidesnewsletters.2001.marapr03 ◽

2001 ◽

Vol 6 (2) ◽

pp. 6-8

Author(s):

Christopher R. Brigham

Keyword(s):

Informed Consent ◽

Physical Examination ◽

Functional Status ◽

Web Sites ◽

Satisfaction Survey ◽

High Quality ◽

Diagnostic Studies ◽

Physician Relationship ◽

Complete History

Abstract The AMA Guides to the Evaluation of Permanent Impairment (AMA Guides), Fifth Edition, explains that independent medical evaluations (IMEs) are not the same as impairment evaluations, and the evaluation must be designed to provide the data to answer the questions asked by the requesting client. This article continues discussions from the September/October issue of The Guides Newsletter and examines what occurs after the examinee arrives in the physician's office. First are orientation and obtaining informed consent, and the examinee must understand that there is no patient–physician relationship and the physician will not provide treatment bur rather will send a report to the client who requested the IME. Many physicians ask the examinee to complete a questionnaire and a series of pain inventories before the interview. Typical elements of a complete history are shown in a table. An equally detailed physical examination follows a meticulous history, and standardized forms for reporting these findings are useful. Pain and functional status inventories may supplement the evaluation, and the examining physician examines radiographic and diagnostic studies. The physician informs the interviewee when the evaluation is complete and, without discussing the findings, asks the examinee to complete a satisfaction survey and reviews the latter to identify and rectify any issues before the examinee leaves. A future article will discuss high-quality IME reports.

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Informed Consent: Exceptions to Disclosure

Internal Medicine News ◽

10.1016/s1097-8690(10)70492-3 ◽

2010 ◽

Vol 43 (9) ◽

pp. 48

Author(s):

S.Y. TAN

Keyword(s):

Informed Consent

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FDA Reviews One Informed Consent Rule

Rheumatology News ◽

10.1016/s1541-9800(06)71614-3 ◽

2006 ◽

Vol 5 (12) ◽

pp. 62

Author(s):

ELIZABETH MECHCATIE

Keyword(s):

Informed Consent

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Informed Consent

10.1017/cbo9781139057523 ◽

2011 ◽

Cited By ~ 5

Author(s):

Deborah Bowman ◽

John Spicer ◽

Rehana Iqbal

Keyword(s):

Informed Consent

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Autonomy, Privacy and the Implementation of the Principle of Informed Consent with regard to the Nursing Interventions from the View of elderly People

Pflege ◽

10.1024/1012-5302.14.1.29 ◽

2001 ◽

Vol 14 (1) ◽

pp. 29-37 ◽

Cited By ~ 1

Author(s):

Anja Schopp ◽

Theo Dassen ◽

Maritta Välimäki ◽

Helena Leino-Kilpi ◽

Gerd Bansemir ◽

...

Keyword(s):

Informed Consent ◽

Elderly People ◽

Ältere Menschen ◽

Nursing Interventions ◽

Patient’S Autonomy

Ziel dieser Untersuchung war die Autonomie, Privatheit und die Umsetzung des Prinzips der «informierten Zustimmung» aus der Perspektive des institutionell zu betreuenden, älteren Menschen zu beschreiben. Die Untersuchung ist ein Teil des durch die EU-Kommission unterstützten BIOMED 2 Projektes «Patient’s autonomy and privacy in nursing interventions»1. Interviewdaten (n = 95) wurden in deutschen Kliniken der Geriatrie und Pflegeheimen gesammelt. Ergebnisse zeigten, dass die Teilnehmer in geringem Maß selbstbestimmte Entscheidungen treffen konnten. Das Prinzip der «informierten Zustimmung» wurde wenig umgesetzt. Ihre Privatheit sahen die Teilnehmer in Mehrbettzimmern sowie in Situationen des Ankleidens und bei der Verrichtung der Ausscheidungen nicht respektiert. Es ist anzunehmen, dass ältere Menschen wegen Informationsdefiziten, durch ihren Hilfsbedarf und durch die festgelegten Organisationsstrukturen der Pflegeeinrichtungen eine passive Krankenrolle übernehmen. Es wäre denkbar, dass die Autonomie der älteren Menschen gefördert werden könnte, wenn die Pflegekräfte sie in der Rolle des Fürsprechers bei selbstbestimmten Entscheidungen unterstützen würden. Bei den pflegerischen Interventionen würde die Umsetzung des Prinzips der «informierten Zustimmung» sowohl die Autonomie als auch die Respektierung der Privatheit fördern. Es ist außerdem anzunehmen, dass durch Flexibilisierung der Organisationsstrukturen der Pflegeeinrichtungen die Autonomie und Lebensqualität der älteren Menschen gefördert werden könnte.

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