Communicating the Results of Clinical Research to Participants: Attitudes, Practices, and Future Directions


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Vyšlo v časopise: Communicating the Results of Clinical Research to Participants: Attitudes, Practices, and Future Directions. PLoS Med 5(5): e91. doi:10.1371/journal.pmed.0050091
Kategorie: Guidelines and Guidance
prolekare.web.journal.doi_sk: https://doi.org/10.1371/journal.pmed.0050091

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1. FernandezCVKodishEWeijerC

2003

Informing study participants of research results: An ethical imperative.

IRB

25

12

9

2. ShalowitzDIMillerFG

2005

Disclosing individual results of clinical research: Implications of respect for participants.

JAMA

294

737

740

3. KnoppersBMJolyYSimardJDurocherF

2006

The emergence of an ethical duty to disclose genetic research results: International perspectives.

Eur J Hum Genet

14

1170

1178

4. GarciaJ

1987

Sharing research results with patients: The views of care-givers involved in a randomized controlled trial.

J Reprod Infant Psychol

5

9

13

5. SnowdonCGarciaJElbourneD

1998

Reactions of participants to the results of a randomised controlled trial: Exploratory study.

BMJ

317

21

26

6. ElbourneD

1987

Subjects' views about participation in a randomized controlled trial.

J Reprod Infant Psychol

5

3

8

7. OrmondroydEMoynihanCWatsonMFosterCDavollsS

2007

Disclosure of genetics research results after the death of the patient participant: A qualitative study of the impact on relatives.

J Genet Couns

16

527

538

8. Dixon-WoodsMJacksonCWindridgeKCKenyonS

2006

Receiving a summary of the results of a trial: Qualitative study of participants' views.

BMJ

332

206

210

9. OrmondKESmithMECirinoALChisholmRLWolfWA

2004

“Duty” to recontact participants in a population based genetic database: The NUgene experience.

American College of Medical Genetics Annual Conference; 6 March 2004; Kissimmee, Florida, United States

10. BuninGRKazakAEMitelmanO

1996

Informing subjects of epidemiologic study results. Children's Cancer Group.

Pediatrics

97

486

491

11. RichardsMPPonderMPharoahPEverestSMackayJ

2003

Issues of consent and feedback in a genetic epidemiological study of women with breast cancer.

J Med Ethics

29

93

96

12. FernandezCVKodishEShurinSWeijerC

2003

Offering to return results to research participants: Attitudes and needs of principal investigators in the Children's Oncology Group.

J Pediatr Hematol Oncol

25

704

708

13. FernandezCVKodishETaweelSShurinSWeijerC

2003

Disclosure of the right of research participants to receive research results: An analysis of consent forms in the Children's Oncology Group.

Cancer

97

2904

2909

14. FernandezCVSantorDWeijerCStrahlendorfCMoghrabiA

2007

The return of research results to participants: Pilot questionnaire of adolescents and parents of children with cancer.

Pediatr Blood Cancer

48

441

446

15. FernandezCVTaweelSKodishEWeijerC

2005

Disclosure of research results to research participants: A pilot study of the needs and attitudes of adolescents and parents.

Paediatr Child Health

10

332

334

16. PartridgeAHBursteinHJGelmanRSMarcomPKWinerEP

2003

Do patients participating in clinical trials want to know study results.

J Natl Cancer Inst

95

491

492

17. PartridgeAHHackettNBloodEGelmanRJoffeS

2004

Oncology physician and nurse practices and attitudes regarding offering clinical trial results to study participants.

J Natl Cancer Inst

96

629

632

18. PartridgeAHWongJSKnudsenKGelmanRSampsonE

2005

Offering participants results of a clinical trial: Sharing results of a negative study.

Lancet

365

963

964

19. SchulzCJRiddleMPValdimirsdottirHBAbramsonDHSklarCA

2003

Impact on survivors of retinoblastoma when informed of study results on risk of second cancers.

Med Pediatr Oncol

41

36

43

20. WendlerDPentzR

2007

How does the collection of genetic test results affect research participants.

Am J Med Genet A

143

1733

1738

21. FongMBraunKLChangRM

2004

Native Hawaiian preferences for informed consent and disclosure of results from research using stored biological specimens.

Pac Health Dialog

11

154

159

22. HoeyerKOlofssonBOMjorndalTLynoeN

2004

Informed consent and biobanks: A population-based study of attitudes towards tissue donation for genetic research.

Scand J Public Health

32

224

229

23. MoutelGDuchangeNRaffiFShararaLITheodorouI

2005

Communication of pharmacogenetic research results to HIV-infected treated patients: Standpoints of professionals and patients.

Eur J Hum Genet

13

1055

1062

24. BuchwaldHFitchLLMattsJPJohnsonJWHansenBJ

1993

Perception of quality of life before and after disclosure of trial results: A report from the Program on the Surgical Control of the Hyperlipidemias (POSCH).

Control Clin Trials

14

500

510

25. WendlerDPrasadKWilfondB

2002

Does the current consent process minimize the risks of genetics research.

Am J Med Genet

113

258

262

26. Di BlasiZKaptchukTJWeinmanJKleijnenJ

2002

Informing participants of allocation to placebo at trial closure: Postal survey.

BMJ

325

1329

27. DinnettEMMungallMMGordonCRonaldESGawA

2006

Offering results to research participants.

BMJ

332

549

550

28. DinnettEMMungallMMKentJARonaldESMcIntyreKE

2005

Unblinding of trial participants to their treatment allocation: Lessons from the Prospective Study of Pravastatin in the Elderly at Risk (PROSPER).

Clin Trials

2

254

259

29. MacneilSDFernandezCV

2006

Informing research participants of research results: Analysis of Canadian university based research ethics board policies.

J Med Ethics

32

49

54

30. MacNeilSDFernandezCV

2007

Attitudes of research ethics board chairs towards disclosure of research results to participants: Results of a national survey.

J Med Ethics

33

549

553

31. RigbyHFernandezCV

2005

Providing research results to study participants: Support versus practice of researchers presenting at the American Society of Hematology annual meeting.

Blood

106

1199

1202

32. WendlerDEmanuelE

2002

The debate over research on stored biological samples: What do sources think.

Arch Intern Med

162

1457

1462

33. BayerR

1986

Notifying workers at risk: The politics of the right-to-know.

Am J Public Health

76

1352

1356

34. SchultePABoalWLFriedlandJMWalkerJTConnallyLB

1993

Methodologic issues in risk communications to workers.

Am J Ind Med

23

3

9

35. RingenK

1989

The case for worker notification.

Ann N Y Acad Sci

572

133

141

discussion 142–143

36. WoodFB

1990

Letter submitted to NIOSH by Westinghouse Electric Corporation as part of a panel of experts' analysis regarding interim report.

HETA

89

116

37. HornsbyJLSappingtonJTMonganPGullenWHBonoSF

1985

Risk for bladder cancer. Psychological impact of notification.

JAMA

253

1899

1902

38. HoutsPSMcDougallV

1988

Effects of informing workers of their health risks from exposure to toxic materials.

Am J Ind Med

13

271

279

39. MeyerowitzBESullivanCDPremeauCL

1989

Reactions of asbestos-exposed workers to notification and screening.

Am J Ind Med

15

463

475

40. MazzuckelliLFSchultePA

1993

Notification of workers about an excess of malignant melanoma: A case study.

Am J Ind Med

23

85

91

41. KumekawaESLashAABeckerCE

1992

Challenges of worker notification in neurotoxic studies of the central nervous system.

Environ Res

59

125

131

42. LashAAKumekawaESBeckerCE

1993

Evaluating the clarity of research reports written for research subjects.

Am J Ind Med

23

211

219

43. MeyerowitzBE

1993

Assessing quality of life when planning and evaluating worker notification programs: Two case examples.

Am J Ind Med

23

221

227

44. NeedlemanC

1993

Social aspects of high-risk notification among chromium-exposed workers.

Am J Ind Med

23

113

123

45. NeedlemanC

1993

Worker notification: Lessons from the past.

Am J Ind Med

23

11

23

46. RudolphL

1993

Issues in notification: Reflections of a public health worker.

Am J Ind Med

23

53

59

47. BroadstockMMichieSMarteauT

2000

Psychological consequences of predictive genetic testing: A systematic review.

Eur J Hum Genet

8

731

738

48. LermanCCroyleRTTercyakKPHamannH

2002

Genetic testing: Psychological aspects and implications.

J Consult Clin Psychol

70

784

797

49. SmithCOLipeHPBirdTD

2004

Impact of presymptomatic genetic testing for hereditary ataxia and neuromuscular disorders.

Arch Neurol

61

875

880

50. SteinbartEJSmithCOPoorkajPBirdTD

2001

Impact of DNA testing for early-onset familial Alzheimer disease and frontotemporal dementia.

Arch Neurol

58

1828

1831

51. DorvalMGauthierGMaunsellEDugasMJRouleauI

2005

No evidence of false reassurance among women with an inconclusive BRCA1/2 genetic test result.

Cancer Epidemiol Biomarkers Prev

14

2862

2867

52. DrossaertCHBoerHSeydelER

2001

Does mammographic screening and a negative result affect attitudes towards future breast screening.

J Med Screen

8

204

212

53. MarteauTMKinmonthALThompsonSPykeS

1996

The psychological impact of cardiovascular screening and intervention in primary care: A problem of false reassurance? British Family Heart Study Group.

Br J Gen Pract

46

577

582

54. MarteauTMRobertsSLaRusseSGreenRC

2005

Predictive genetic testing for Alzheimer's disease: Impact upon risk perception.

Risk Anal

25

397

404

55. van DijkSOttenWTimmermansDRvan AsperenCJMeijers-HeijboerH

2005

What's the message? Interpretation of an uninformative BRCA1/2 test result for women at risk of familial breast cancer.

Genet Med

7

239

245

56. JohnsonKATrimbathJDPetersenGMGriffinCAGiardielloFM

2002

Impact of genetic counseling and testing on colorectal cancer screening behavior.

Genet Test

6

303

306

57. LermanCMarshallJAudrainJGomez-CamineroA

1996

Genetic testing for colon cancer susceptibility: Anticipated reactions of patients and challenges to providers.

Int J Cancer

69

58

61

58. ClausenHBrandtNJSchwartzMFlemmingS

1996

Psychological impact of carrier screening for cystic fibrosis among pregnant women.

Eur J Hum Genet

4

120

123

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Interné lekárstvo

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