| Title |
Ethical, Legal, and Counseling Challenges Surrounding the Return of Genetic Results in Oncology
|
|---|---|
| Published in |
Journal of Clinical Oncology, April 2013
|
| DOI | 10.1200/jco.2012.45.2789 |
| Pubmed ID | |
| Authors |
Martijn P. Lolkema, Christa G. Gadellaa-van Hooijdonk, Annelien L. Bredenoord, Peter Kapitein, Nancy Roach, Edwin Cuppen, Nine V. Knoers, Emile E. Voest |
| Abstract |
In the last decade, an overwhelming number of genetic aberrations have been discovered and linked to the development of treatment for cancer. With the rapid advancement of next-generation sequencing (NGS) techniques, it is expected that large-scale DNA analyses will increasingly be used to select patients for treatment with specific anticancer agents. Personalizing cancer treatment has many advantages, but sequencing germline DNA as reference material for interpreting cancer genetics may have consequences that extend beyond providing cancer care for an individual patient. In sequencing germline DNA, mutations may be encountered that are associated with increased susceptibility not only to hereditary cancer syndromes but also to other diseases; in those cases, disclosing germline data could be clinically relevant and even lifesaving. In the context of personal autonomy, it is necessary to develop an ethical and legal framework for how to deal with identified hereditary disease susceptibilities and how to return the data to patients and their families. Because clear legislation is lacking, we need to establish guidelines on disclosure of genetic information and, in the process, we need to balance privacy issues with the potential advantages and drawbacks of sharing genetic data with patients and their relatives. Importantly, a strong partnership with patients is critical for understanding how to maximize the translation of genetic information for the benefit of patients with cancer. This review discusses the ethical, legal, and counseling issues surrounding disclosure of genetic information generated by NGS to patients with cancer and their relatives. We also provide a framework for returning these genetic results by proposing a design for a qualified disclosure policy. |
X Demographics
The data shown below were collected from the profiles of 16 X users who shared this research output. Click here to find out more about how the information was compiled.
Geographical breakdown
| Country | Count | As % |
|---|---|---|
| United States | 7 | 44% |
| Netherlands | 2 | 13% |
| Mexico | 1 | 6% |
| United Kingdom | 1 | 6% |
| Venezuela, Bolivarian Republic of | 1 | 6% |
| Unknown | 4 | 25% |
Demographic breakdown
| Type | Count | As % |
|---|---|---|
| Members of the public | 8 | 50% |
| Scientists | 5 | 31% |
| Practitioners (doctors, other healthcare professionals) | 2 | 13% |
| Science communicators (journalists, bloggers, editors) | 1 | 6% |
Mendeley readers
The data shown below were compiled from readership statistics for 134 Mendeley readers of this research output. Click here to see the associated Mendeley record.
Geographical breakdown
| Country | Count | As % |
|---|---|---|
| United States | 2 | 1% |
| Japan | 2 | 1% |
| Netherlands | 1 | <1% |
| Australia | 1 | <1% |
| Belgium | 1 | <1% |
| Switzerland | 1 | <1% |
| Canada | 1 | <1% |
| China | 1 | <1% |
| Unknown | 124 | 93% |
Demographic breakdown
| Readers by professional status | Count | As % |
|---|---|---|
| Researcher | 28 | 21% |
| Student > Ph. D. Student | 22 | 16% |
| Other | 17 | 13% |
| Student > Master | 14 | 10% |
| Student > Bachelor | 13 | 10% |
| Other | 22 | 16% |
| Unknown | 18 | 13% |
| Readers by discipline | Count | As % |
|---|---|---|
| Medicine and Dentistry | 49 | 37% |
| Agricultural and Biological Sciences | 28 | 21% |
| Biochemistry, Genetics and Molecular Biology | 11 | 8% |
| Social Sciences | 9 | 7% |
| Computer Science | 4 | 3% |
| Other | 12 | 9% |
| Unknown | 21 | 16% |
Attention Score in Context
This research output has an Altmetric Attention Score of 10. This is our high-level measure of the quality and quantity of online attention that it has received. This Attention Score, as well as the ranking and number of research outputs shown below, was calculated when the research output was last mentioned on 22 June 2013.
All research outputs
#3,586,392
of 25,374,917 outputs
Outputs from Journal of Clinical Oncology
#7,709
of 22,047 outputs
Outputs of similar age
#29,622
of 209,607 outputs
Outputs of similar age from Journal of Clinical Oncology
#89
of 266 outputs
Altmetric has tracked 25,374,917 research outputs across all sources so far. Compared to these this one has done well and is in the 85th percentile: it's in the top 25% of all research outputs ever tracked by Altmetric.
So far Altmetric has tracked 22,047 research outputs from this source. They typically receive a lot more attention than average, with a mean Attention Score of 21.0. This one has gotten more attention than average, scoring higher than 65% of its peers.
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We're also able to compare this research output to 266 others from the same source and published within six weeks on either side of this one. This one has gotten more attention than average, scoring higher than 66% of its contemporaries.