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Published on: February 23, 2011
Digital technologies in genetic counseling: Recommendations for a morally sound integration
Marlies N van Lingen1, Noor A A Giesbertz2, Karin R Jongsma3
1University Medical Centre Utrecht, Genetics department, The Netherlands.
Abstract:
To address the increasing demand for clinical genetic counseling, digital technologies are currently being developed to increase efficiency and overcome logistical and societal barriers in genetic health care. However, it is not self-evident that genetic technologies will improve the quality of and access to genetic counseling. Moreover, several ethical questions about the appropriate tasks of digital technologies in the genetic care process have been raised, particularly when personal contact is supplemented or even replaced with digital technologies. Ethical reflections on the introduction of digital resources in genetic counseling are scarce. Here, we reflect on 3 central domains in which promises of the digitalization of genetic counseling are generally discussed: (1) promoting patient autonomy and patient-centered care, (2) increasing efficiency, and (3) increasing accessibility. We argue that the benefits of digitalization are not self-evident and are paired with challenges. We conclude by offering 4 recommendations to promote the ethically sound development of digital technologies in genetic health care: (1) specify the intended tasks and expected benefits of the digital technology, (2) identify potential challenges of digitalization, (3) consider the role of end users within the genetic care process, and (4) ensure iterative stakeholder consultation and engagement.
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