DCS grant for project on next-generation DNA sequencing
09 January 2015
Annelien Bredenoord and Emiel Voest, in conjunction with Anne May and the CPCT, have received a €278,000 grant from the Dutch Cancer Society (DCS) for their project, an empirical-ethical study on how to responsibly introduce next-generation DNA sequencing into oncology care.
The improved techniques for reading DNA, known as Next-Generation Sequencing (NGS), have made it possible to largely predict how different types of cancer will develop and what kinds of DNA changes a tumor will cause. This represents an important and extraordinary step forward in cancer treatment, since information on how a cancer originates and grows can be used to determine the best drugs for fighting it. Patients could thus be offered “personalized” treatment plans, thereby eliminating exposure to the unnecessary side effects that accompany generalized treatments.
For the time-being, DNA analysis is only an option for people whose cancer has spread. NGS is not yet being applied to routine diagnosis, but that is expected to change in the next few years for certain forms of cancer. One major item of concern in the use of NGS is that it yields information not only on the disease under investigation, but could also incidentally uncover mutations (genetic aberrations) as a “bycatch”. These mutations might point to an increased risk of certain disorders or diseases in a family, such as inherited forms of cancer or perhaps neurological or psychological illnesses. These results could have medical, psychological, social and financial implications for the patent and a profound impact on his or her quality fo life. Moreover, the research results could also be relevant to immediate family members.
Clearly, the increased possibilities afforded by genetic testing bring with them many ethical and counseling challenges that must be tackled. Earlier studies have revealed a growing ethical consensus about reporting back to patients a few certain sets of information in any event. At present, however, there is only limited knowledge about the needs and preferences of patients regarding such information and receiving guidance in hearing the results of NGS analysis. As such, there is a need for more empirical research to evaluate the proposed policy and survey the opinions and preferences of cancer patients. In addition, a number of ethical questions require clarification: What moral responsibilities do both doctors and patients have toward family members? Can care providers warn family members or is that an unacceptable breach of patient confidentiality? Do doctors or researchers have an obligation to contact patients anew if new information comes to light? What happens when patients die?
The objective of our planned study is to develop an ethical framework for reporting information about any increased risk of inherited disorders back to patients who are eligible for NGS as part of a personalized cancer treatment plan. The proposed policy will be based on the needs and preferences of patients. The research question will be answered through a combination of qualitative research (semi-structured interviews), quantitative research (a structured questionnaire) and ethical analysis.