Considerations and costs of disclosing study findings to research participants

被引:58
作者
Fernandez, CV
Skedgel, C
Weijer, C
机构
[1] IWK Hlth Ctr, Dept Pediat, Div Pediat Hematol & Oncol, Halifax, NS B3J 3G9, Canada
[2] Queen Elizabeth 2 Hlth Sci Ctr, Dept Med, Halifax, NS, Canada
[3] Dalhousie Univ, Dept Bioeth, Halifax, NS, Canada
关键词
D O I
10.1503/cmaj.1031668
中图分类号
R5 [内科学];
学科分类号
1002 ; 100201 ;
摘要
Estimating the costs of dissemination will be relatively straightforward for many studies but will be more challenging when it is necessary to quantify the differences in cost due to intrinsic risk, consequences and time elements. Researchers and granting agencies should consider the offer to return results to research participants as a mandatory part of practice and adjust budgets and duration of funding accordingly. If the disclosure is expected to be associated with harm, and if that harm can be minimized through direct disclosure, men direct disclosure ought to be offered. It is essential to determine the wants and needs of participants with respect to how best to offer and disseminate research results, and we are currently exploring these questions.
引用
收藏
页码:1417 / 1419
页数:3
相关论文
共 19 条
[1]   PERSPECTIVE ON THE CONTENT OF WORKER NOTIFICATIONS [J].
ACQUAVELLA, JF ;
COLLINS, JJ .
AMERICAN JOURNAL OF INDUSTRIAL MEDICINE, 1993, 23 (01) :77-83
[2]   Breast cancer and other second neoplasms after childhood Hodgkin's disease [J].
Bhatia, S ;
Robison, LL ;
Oberlin, O ;
Greenberg, M ;
Bunin, G ;
FossatiBellani, F ;
Meadows, AT .
NEW ENGLAND JOURNAL OF MEDICINE, 1996, 334 (12) :745-751
[3]   WORKERS RESPONSE TO RISK NOTIFICATION [J].
BOAL, WL ;
FRIEDLAND, J ;
SCHULTE, PA .
AMERICAN JOURNAL OF INDUSTRIAL MEDICINE, 1995, 27 (04) :471-483
[4]   PSYCHOLOGICAL COSTS AND BENEFITS OF PREDICTIVE TESTING FOR HUNTINGTONS-DISEASE [J].
CODORI, AM ;
BRANDT, J .
AMERICAN JOURNAL OF MEDICAL GENETICS, 1994, 54 (03) :174-184
[5]   THE FATE OF ABSTRACTS SUBMITTED TO A CANCER MEETING - FACTORS WHICH INFLUENCE PRESENTATION AND SUBSEQUENT PUBLICATION [J].
DEBELLEFEUILLE, C ;
MORRISON, CA ;
TANNOCK, IF .
ANNALS OF ONCOLOGY, 1992, 3 (03) :187-191
[6]   Breast cancer screening in women previously treated for Hodgkin's disease: A prospective cohort study [J].
Diller, L ;
Nancarrow, CM ;
Shaffer, K ;
Matulonis, U ;
Mauch, P ;
Neuberg, D ;
Tarbell, NJ ;
Litman, H ;
Garber, J .
JOURNAL OF CLINICAL ONCOLOGY, 2002, 20 (08) :2085-2091
[7]   Anticipated versus actual emotional reactions to disclosure of results of genetic tests for cancer susceptibility:: Findings from p53 and BRCA1 testing programs [J].
Dorval, M ;
Patenaude, AF ;
Schneider, KA ;
Kieffer, SA ;
DiGianni, L ;
Kalkbrenner, KJ ;
Bromberg, JI ;
Basili, LA ;
Calzone, K ;
Stopfer, J ;
Weber, BL ;
Garber, JE .
JOURNAL OF CLINICAL ONCOLOGY, 2000, 18 (10) :2135-2142
[8]  
Fernandez Conrad V, 2003, IRB, V25, P12, DOI 10.2307/3564300
[9]  
Fernandez CV, 2003, BLOOD, V102, p202A
[10]   Offering to return results to research participants: Attitudes and needs of principal investigators in the Children's Oncology Group [J].
Fernandez, CV ;
Kodish, E ;
Shurin, S ;
Weijer, C .
JOURNAL OF PEDIATRIC HEMATOLOGY ONCOLOGY, 2003, 25 (09) :704-708