Ethical considerations in forensic genetics research on tissue samples collected post-mortem in Cape Town, South Africa

BMC Medical Ethics 2017 18:66
Authors: Laura J. Heathfield, Sairita Maistry et al.
“The use of tissue collected at a forensic post-mortem for forensic genetics research purposes remains of ethical concern as the process involves obtaining informed consent from grieving family members. Two forensic genetics research studies using tissue collected from a forensic post-mortem were recently initiated at our institution and were the first of their kind to be conducted in Cape Town, South Africa.”
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F.D.A. Speeds Review of Gene Therapies, Vowing to Target Rogue Clinics

NYT, 17 November 2017
Authors: Sheila Kaplan, Denise Grady
“The Food and Drug Administration on Thursday issued new guidelines to speed the introduction of treatments involving human cells and tissues, including gene therapy. But the agency also said it would crack down on rogue clinics offering dangerous or unproven versions of those treatments.”
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Designing Ethical Trials of Germline Gene Editing

N Engl J Med 2017; 377:1911-1913
Author: Bryan Cwik
“Much of the biomedical ethics literature on gene editing has focused on broad social issues related to how it should be done, such as questions about using it for enhancing human cognitive abilities. Comparatively little has dealt with more ground-floor ethical issues about the design of clinical trials and use of gene editing in reproductive medicine. The time for that discussion has now come: foreseeable use of gene editing in reproductive medicine is no longer science fiction, and it’s important to consider seriously what would be required for the conduct of ethically sound clinical trials of this new technology.”
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2 Couples Sue After Children Are Born With Genetic Abnormality Traced Back to Donated Eggs

Time, 16 November 2017
Author: David Klepper
“Two couples are suing a New York fertility doctor and his clinic after giving birth to children with a genetic abnormality later traced back to donated eggs. The two children, both born in 2009, have Fragile X syndrome, a genetic condition that can lead to intellectual and developmental impairments. The parents, identified by initials and last names in legal papers, argue the doctor and the clinic failed to test the women who donated the eggs to determine whether they were carriers for Fragile X. They’re seeking damages for the added expenses of raising a disabled child.”
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Insurers discriminating against people who get genetic test results could hobble research, bioethicists warn

SMH, 8 November 2017
Author: Kate Aubusson
“Insurers are able to discriminate against individuals who undergo genetic testing, and that threatens to hobble genomic research, bioethics and law experts have warned in a recent paper published in Public Health Genomics. Anyone who receives their results of genetic testing as part of a research project needs to disclose them to insurers if asked, despite the Human Genetics Society of Australasia calling for research findings to be excluded. Insurers can deny cover or hike up premiums for healthy individuals who discover they carry a mutation for a condition they may never develop based on the testing results, the authors warned.”
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Genetic privacy v duty to disclose: who wins?

MJA Insight, 6 November 2017
Author: Jane McCredie
“As we delve ever further into the human genome, ethical and legal frameworks are struggling to keep up. Given the potential of genetic information to affect people’s employment prospects, or ability to get insurance, there’s been an understandable focus on protecting genetic privacy. But what of situations where a patient refuses to share information that might give relatives the opportunity to identify their own genetic risk and seek early prevention or treatment?”
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The libertarian right to test genetically

JME Blog, 3 November 2017
Author: Michele Loi
“Should individuals be permitted to access their own genetic data without the mediation of a medical professional? In ‘Direct to Consumer Genetic Testing and the Libertarian Right to Test‘, I argued that they should, provided that they bear the associated costs. I provided a libertarian justification for this position, one grounded in a person’s right to self-ownership. Individuals are the sole legitimate moral owners of the DNA inside their bodies, just as they are the sole legitimate owners of their eyes and kidneys.”
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Public trust and ‘ethics review’ as a commodity: the case of Genomics England Limited and the UK’s 100,000 genomes project

Med Health Care and Philos, 2017, 1-10
Authors: Gabrielle Natalie Samuel, Bobbie Farsides
“The UK Chief Medical Officer’s 2016 Annual Report, Generation Genome, focused on a vision to fully integrate genomics into all aspects of the UK’s National Health Service (NHS). This process of integration, which has now already begun, raises a wide range of social and ethical concerns, many of which were discussed in the final Chapter of the report. This paper explores how the UK’s 100,000 Genomes Project (100 kGP)—the catalyst for Generation Genome, and for bringing genomics into the NHS—is negotiating these ethical concerns.”
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Dealing with treatment and transfer requests: how PGD-professionals discuss ethical challenges arising in everyday practice

Med Health Care and Philos, 2017, pp1-12
Authors: Soto-Lafontaine, M., Dondorp, W., Provoost, V. et al.
“How do professionals working in pre-implantation genetic diagnosis (PGD) reflect upon their decision making with regard to ethical challenges arising in everyday practice? Two focus group discussions were held with staff of reproductive genetic clinics: one in Utrecht (The Netherlands) with PGD-professionals from Dutch PGD-centres and one in Prague (Czech Republic) with PGD-professionals working in centres in different European countries. Both meetings consisted of two parts, exploring participants’ views regarding (1) treatment requests for conditions that may not fulfill traditional indications criteria for PGD, and (2) treatment and transfer requests involving welfare-of-the-child considerations.”
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