Healthcare professionals’ and researchers’ understanding of cancer genetics activities: a qualitative interview study: Table 1

Hallowell, Nina; Cooke, Sarah; Crawford, Gillian; Parker, Michael; Lucassen, Anneke

doi:10.1136/jme.2008.024224

Cited by 25 publications

(22 citation statements)

References 23 publications

(29 reference statements)

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“…Distinguishing research from clinical activities is seen as critical from an ethical standpoint 11 as the actors involved in these different activities are seen as having different rights and duties; but in reality the boundary between these activities is becoming increasingly indistinct particularly in genetics and genomics 4 12 13. The result is that patients and research participants may find it difficult to distinguish between research and clinical activities, particularly when their clinician is also a researcher interested in investigating their condition14 or the research participant is also a patient 13.…”

Section: To Disclose or Feedback Or Not To Disclose Or Feedback Thatmentioning

confidence: 99%

“…The result is that patients and research participants may find it difficult to distinguish between research and clinical activities, particularly when their clinician is also a researcher interested in investigating their condition14 or the research participant is also a patient 13. Moreover, clinical activities are increasingly regarded as having a research element 15.…”

Section: To Disclose or Feedback Or Not To Disclose Or Feedback Thatmentioning

confidence: 99%

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Revealing the results of whole-genome sequencing and whole-exome sequencing in research and clinical investigations: some ethical issues: Table 1

et al. 2014

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The introduction of new sequencing technologies wholegenome sequencing (WGS) and whole-exome sequencing (WES) that are much less finely targeted than previous genetic tests has resulted in ethical debate about what should be done with clinically significant findings that may arise during the sequencing process. In this piece we argue that, in addition to whether the finding has been intentionally sought or arises incidentally, the ethical issues concerning what should be done with WES and WGS findings are also influenced by whether sequencing occurs in a clinical or research setting. We argue that decisions about the disclosure of WGS and WES findings generated in the clinical context are much less ethically contentious than decision making about the feedback of research results. We conclude by calling for greater transparency about the purpose of sample collection, more explicit protocols for transitioning between research and clinical contexts and patients and research participants to be warned of the potential for incidental findings to be generated, their potential significance and the actions that might be taken as a result.

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Section: To Disclose or Feedback Or Not To Disclose Or Feedback Thatmentioning

confidence: 99%

Section: To Disclose or Feedback Or Not To Disclose Or Feedback Thatmentioning

confidence: 99%

Revealing the results of whole-genome sequencing and whole-exome sequencing in research and clinical investigations: some ethical issues: Table 1

et al. 2014

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“…The overall aim of this qualitative interview study was to investigate lay and professional perceptions of the activities that take place in the cancer genetics clinic 18. In addition to healthcare professionals, researchers and other stakeholders, the study included three groups of patients who had been involved in different types of research projects.…”

Section: The Nature Of Altruism?mentioning

confidence: 99%

An investigation of patients’ motivations for their participation in genetics-related research

et al. 2009

Self Cite

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We discuss the distinction drawn between motives for research participation focused upon self (personal) and others (familial/social), and observe that personal, social and familial motives can be seen as interdependent. For example, research participation that is undertaken to benefit others, particularly relatives, may also offer a number of personal benefits for self, such as enabling participants to feel that they have discharged their social or familial obligations. We argue for the need to move away from simple, static, individualised notions of research participation to a more complex, dynamic and inherently social account.

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“…Clinical genetic testing for cancer patients can often closely resemble genomic research undertaken to study a new set of mutations, particularly when that research produces genetic information that is clinically relevant to participants [21]. The relationship between research and clinical care in this field seems almost impossible to untangle.…”

Section: The Blurring Distinction Between Genomic Research and Clinicalmentioning

confidence: 99%

The Unintended Implications of Blurring the Line Between Research and Clinical Care in a Genomic Age

Berkman

Hull

Eckstein

2014

Personalized Medicine

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While the development of next-generation sequencing technology has had a paradigm-changing impact on biomedical research, there is likely to be a gap between discovery of therapeutic benefits in research and actual adoption of the new technology into clinical practice. This gap can create pressure on the research enterprise to provide individualized care more typical of the clinic setting because it is uniquely accessible in research. This blurring of the line between research and clinical care is understandable, and perhaps even inevitable. But even if the gap is only transitory, such a blurring can have lasting implications, both by expanding obligations imposed on researchers, but also by challenging long-held ethical views. We explore this idea, focusing on how the dissolving distinction between research and clinical care has influenced the vigorous debate around how researchers should manage genetic findings (sometimes separated into primary and incidental or secondary findings) resulting from research.

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Healthcare professionals’ and researchers’ understanding of cancer genetics activities: a qualitative interview study: Table 1

Cited by 25 publications

References 23 publications

Revealing the results of whole-genome sequencing and whole-exome sequencing in research and clinical investigations: some ethical issues: Table 1

Revealing the results of whole-genome sequencing and whole-exome sequencing in research and clinical investigations: some ethical issues: Table 1

An investigation of patients’ motivations for their participation in genetics-related research

The Unintended Implications of Blurring the Line Between Research and Clinical Care in a Genomic Age

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