Culture, law, ethics, and social implications: Is society ready for advanced genomic medicine?

Cornwall, Jon; Slatter, Tania L.; Guilford, Parry; Print, Cristin G.; Henaghan, Mark; Wee, Richman

doi:10.21767/amj.2014.2069

Cited by 3 publications

(3 citation statements)

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“…Currently, the expectations for the benefit of genomic medicine are high, both within the medical profession and among the lay public. A next step is the recognition that acceptance of this new technology will be subject to the beliefs and values of individual groups that make up our communities (Cornwall et al 2014). In order to address individual preferences, it is becoming clear that there is a need to better understand the unique needs of personal, social, and cultural groups to guide clinical decisions.…”

Section: Next Stepsmentioning

confidence: 99%

Assessing patient readiness for personalized genomic medicine

et al. 2018

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The Human Genome Project and the continuing advances in DNA sequencing technology have ushered in a new era in genomic medicine. Successful translation of genomic medicine into clinical care will require that providers of this information are aware of the level of understanding, attitudes, perceived risks, benefits, and concerns of their patients. We used a mixed methods approach to conduct in-depth interviews with participants in the NCI-funded Breast Cancer Family Registry (BCFR). Our goal was to gain a better understanding of attitudes towards different types and amounts of genomic information, current interest in pursuing genomic testing, and perceived risks and benefits. We interviewed 32 women from the six BCFR sites in the USA, Canada, and Australia. In this sample of women with a personal or family history of breast cancer, we found high acknowledgement of the potential of genetics/genomics to improve their own health and that of their family members through lifestyle changes or alterations in their medical management. Respondents were more familiar with cancer genetics than the genetics of other diseases. Concerns about the testing itself included a potential sense of loss of control over health, feelings of guilt on passing on a mutation to a child, loss of privacy and confidentiality, questions about the test accuracy, and the potential uncertainty of the significance of test results. These data provide important insights into attitudes about the introduction of increasingly complex genetic testing, to inform interventions to prepare individuals for the introduction of this new technology into their clinical care.

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Section: Next Stepsmentioning

confidence: 99%

Assessing patient readiness for personalized genomic medicine

et al. 2018

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“…In additon, there are also medical questions and responsibilities to consider: if exome analysis of donated bodies is undertaken, how should we address incidental findings that could impact on family members? [6,7] Topics such as incidental findings, commercialisation, [8] informed consent, family consent, distribution of digital information, and intellectual property are all arguably more visible topics to consider today than in previous eras.…”

Section: Cautions Surrounding Use Of Digital Information Arising Frommentioning

confidence: 99%

Body donation and digital technology: the ethical issues

Cornwall¹

2017

Anatomy

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Digital technology has become widely embedded in society, and has revolutionised mass communication around the world. Given the widespread use of digital technology across higher education institutions, it is highly likely that such technology will eventually impact upon body donation programmes. In fact, evidence of such impact has already been seen in the uptake of 3-D printing [1] and exome analysis [2] of bodies that have been donated to science. As the use of digital technology becomes more common, it is perhaps pertinent to ask -how will digital technology impact upon body donation, and how can higher education institutions responsibly address this topic? The Potential Benefits of Digital Technology to Body DonationCollecting digital information from bodies donated to science has numerous benefits, with such information able to be used widely across teaching and research. Health-related imaging procedures such as magnetic resonance imaging, computer tomography, and ultrasound all use digital platforms and could be utilised to scan donated bodies; such data is useful in teaching students both how to use and interpret images arising from different diagnostic imaging modalities. Researchers can also use imaging in conjunction with dissection to explore different aspects of gross anatomy. Students can correlate digital information with physical findings and may have a patient history to guide anatomical examination, and researchers can have access to a an information source that can be easily stored and accessed.Digital images from donated bodies can also be distributed and shared widely with little effort, [3] or stored for long (potentially infinite) periods of time. Outside of medical imaging, most photographs are now digital, and 3D printing is also based on digitally acquired information via computer scans. For 3D scanning and printing of bodies donated to science, this format provides a novel way of preserving anatomical anomalies that are identified, and for increasing anatomical teaching resources when the Body donation and digital technology: the ethical issuesJon Cornwall AbstractDigital technology influences many different areas of society, including body donation and the use of bodies donated to science. It affects the manner in which information arising from bodies donated to science can be generated, gathered and utilised. This includes information arising from medical imaging procedures, photographs, and genomic investigation. However many issues remain unclear in relation to this transaction, including the appropriate level of informed consent, family involvement in decision-making and information sharing, and how commercialisation should be addressed. Highlighting these issues shows there is a distinct lack of empirical evidence with which to guide appropriate use of digital information arising from bodies donated to science, and caution is suggested in regard to the acquisition, distribution, and possible commercialisation of such data.

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“…1 This sociologist of diagnosis follows up with a question of her own: can medicine accommodate the social aspects of genetic diagnosis? 1 This sociologist of diagnosis follows up with a question of her own: can medicine accommodate the social aspects of genetic diagnosis?…”

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confidence: 99%