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

Schulz, Charlene J.; Riddle, Mary P.; Valdimirsdottir, Heiddis B.; Abramson, David H.; Sklar, Charles A.

doi:10.1002/mpo.10278

Cited by 63 publications

(56 citation statements)

References 22 publications

(32 reference statements)

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“…Such guidelines need not be strict requirements but rather adaptable strategies that address such issues. 1 More studies are needed to identify specific approaches to address the needs and concerns of both researchers and participants as they relate to this process.…”

Section: Discussionmentioning

confidence: 99%

“…The principle of respect for persons is understood by many researchers to encompass a moral obligation to offer research results to research participants upon the completion of a study. 1 This practice avoids treating people as merely a means to an end, acknowledges that the person made an important contribution to the research project, and may have direct implications for the health of the participants. 2 Additional possible benefits include an improved perception of research by the public and more willing participation in future research.…”

Section: Introductionmentioning

confidence: 99%

“…10 Support for the concept of involving communities in research design and result dissemination is well described. 11,12 There is increasing support among both investigators and participants for the return of research results to individual participants, 1,4,5,[13][14][15] but the frequency with which results are offered is for the most part unknown. The 2 studies that have addressed this question suggest that it is seldom done on a routine basis, 2,4 but the studies have limits to their generalizability in that they surveyed a narrow population of researchers (pediatric oncology and breast cancer trial groups).…”

Section: Introductionmentioning

confidence: 99%

See 2 more Smart Citations

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

Rigby

Fernandez

2005

Blood

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Section: Discussionmentioning

confidence: 99%

Section: Introductionmentioning

confidence: 99%

Section: Introductionmentioning

confidence: 99%

See 1 more Smart Citation

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

Rigby

Fernandez

2005

Blood

View full text Add to dashboard Cite

“…Proponents find confirmation for their position in empiric research with research participants, many of whom believe that such information is owed 3,9,[17][18][19][20][21][22][23][24] and/or will have meaning in their lives. 19,23,[25][26][27][28] Others contend that although the principles of respect for persons, reciprocity, and beneficence should be upheld in the context of research, they may neither be well served if results are disclosed nor denied if they are not disclosed. 7,[29][30][31][32][33] Before unpacking the debates about whether or not participants can understand this information and make meaningful decisions about its receipt, [29][30][31][32] careful consideration is owed to the conditions under which the obligation to report arises in the first place.…”

Section: Introductionmentioning

confidence: 99%

Not so simple: a quasi-experimental study of how researchers adjudicate genetic research results

Hayeems

Miller

et al. 2011

Eur J Hum Genet

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“…19 If necessary, the assessment of expected consequences may be assisted by a lay panel (made up of former participants or peers).…”

Section: Consequences Of Disclosurementioning

confidence: 99%

Considerations and costs of disclosing study findings to research participants

Fernandez¹

2004

Canadian Medical Association Journal

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T he disclosure of study findings to participants in research reflects the moral obligation of researchers, founded in the ethical principle of respect for human dignity, to avoid treating human participants as a means to an end. Human dignity is respected through proper procedures of obtaining informed consent, and an offer to provide research results to participants extends this respect. Unfortunately, researchers adhere inconsistently to this responsibility, 1,2 and little guidance is provided in regulatory policies 3,4 even though a desire for such information has been expressed by research participants. 5 Recently there has been a compelling call to offer research results to participants in clinical trials; 6 we have extended this argument to include all participants in human research. 7Funding agencies should support the allocation and use of research monies in an ethical manner and, thus, should support the appropriate disclosure of results to individual participants and to communities.8 However, the disclosure of results has economic implications for researchers in planning their budgets and for funding agencies in determining an appropriate level and duration of funding. In this article, we briefly review the rationale for offering to disclose research results, focus on specific factors that influence the cost of such a practice and suggest an approach for researchers and funding agencies to consider when developing or assessing research grant applications. The rationale for disclosureThe offer and receipt of research results has many potential benefits for participants and may have a direct impact on their quality of life. For example, research has shown that women who received mantle radiation for Hodgkin's disease as teenagers are at high risk for secondary breast cancer; 9 providing research results to these women may benefit them directly. Participants also benefit from the affirmation of the key role they play in the conduct of research. Disclosure of results may also benefit research as a whole by demonstrating its tangible benefits to the public and by engaging public enthusiasm and support for the principle of research. The receipt of results is not without potential for harm and thus requires informed consent and careful design of disclosure programs. 7 The possible harms encompass immediate effects, for example distress at learning that one has participated in an inferior arm of a clinical trial, and longer-term harms, including a potential impact on the ability to obtain insurance by those with an anticipated high rate of late effects.Research participants have indicated that results should be shared in a timely manner.10,11 The need for peer review before disclosure to study participants has very significant implications for researchers and funding agencies. 7 The resulting increase in the time from the end of data collection to peer review and subsequent publication will require substantially longer periods of research funding than are usually allowed for. 12,13 Thus, the moral imperative ...

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

Abstract: These findings indicate that research participants want feedback even when the information is upsetting. Additional studies are needed to identify individuals who experience greater levels of distress following feedback in an attempt to provide improved methods of feedback and support.

Cited by 63 publications

References 22 publications

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

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

Not so simple: a quasi-experimental study of how researchers adjudicate genetic research results

Considerations and costs of disclosing study findings to research participants

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