Euthanasia and physician-assisted suicide increasingly being legalized, although still relatively uncommon

Euthanasia and physician-assisted suicide in the United States, Canada, and Europe are increasingly being legalized, but they remain relatively rare, and primarily involve patients with cancer, according to a study appearing in the July 5 issue of JAMA.

The authors found that between 0.3 percent to 4.6 percent of all deaths are reported as euthanasia or PAS in jurisdictions where they are legal. The frequency of these deaths increases after legalization. More than 70 percent of cases involved patients with cancer. Typical patients are older, white, and well-educated.

Read more from July 4 JAMA News Release.

Study mentioned:
Emanuel EJ, Onwuteaka-Philipsen BD, Urwin JW, Cohen J. Attitudes and Practices of Euthanasia and Physician-Assisted Suicide in the United States, Canada, and Europe. JAMA. 2016;316(1):79-90.

Exploring the growing interest in drug repurposing in oncology

There is a rapidly growing degree of global interest in the field of drug repurposing in oncology among members of the public and from some policy makers. Drug repurposing is defined as the reuse of drugs as anticancer therapies, according to press release of Anticancer Fund (ACF) issued on 4 February 2016. The promise of repurposing is that drugs with low toxicity and relatively low costs can be made available to patients in a rapidly reduced time-frame compared to the development of totally new drugs. Now a new joint project between the ACF, based in Belgium, and the Institute of Cancer Policy (ICP), King’s College London aims to change that. Read more here.

WHO model list of essential medicines revised

On 8 May 2015, the World Health Organization (WHO) published the new edition of its Model List of Essential Medicines which includes ground-breaking new treatments for a variety of cancers. The move opens the way to improve access to innovative medicines that show clear clinical benefits and could have enormous public health impact globally. Read more here.

Adaptive pathways

Scientists argue that scientific and policy changes will make adaptive pathways the preferred approach to make new treatments available. A number of scientists, including members of the European Medicines Agency (EMA) and its scientific Committees take this position in an article published in the Clinical Pharmacology and Therapeutics.

The concept of adaptive pathways foresees an early approval of a medicine for a restricted patient population based on small initial clinical studies. The first approval is followed by progressive adaptations of the marketing authorisation to expand access to the medicine to broader patient populations based on data gathered from its use and additional studies. Read more here.

Specific clinical trial methodology needed for rare cancers

 A consensus paper (1) published in the Annals of Oncology today by Rare Cancers Europe (RCE), calls for new methodologies to be applied to clinical studies in rare cancers. RCE - a multi-stakeholder initiative representing patient associations, medical societies and industry - is calling both the community of researchers and European authorities to address research methodologies and regulatory criteria that could limit rare cancer patient access to new therapies. This would mean discrimination against this patient population. Read more here.

Henrietta Lacks’ famous cells offered new and unique protection

The National Institutes of Health has announced that it had reached an agreement with the family of the late Henrietta Lacks, the African-American woman whose cancer cells scientists took without her permission 62 years ago and used to create an endlessly replicating cell line now used in countless labs worldwide. NIH director Dr Francis Collins and bioethicist Kathy Hudson, NIH deputy director for science, outreach, and policy, wrote about the agreement in an essay published in Nature. Read more here.

Article mentioned: Hudson KL, Collins FS. 2013. Biospecimen policy: Family matters. Nature. 500: 141–142.

Justices strike down gene patents

The [US] Supreme Court unanimously held Thursday that human genes cannot be patented, even when isolated from the body, a ruling expected to quickly expand access to genetic testing while potentially allowing inventors to retain rights to artificially created DNA.  The decision marked the latest step in the court's decadelong march to toughen the requirements for patents. The justices repeatedly have declared that 21st-century innovation depends less on locking up intellectual-property rights than on expanding access to discoveries in order to spur further progress. The case involved two genes, known as BRCA1 and BRCA2, where mutations can indicate significant likelihood of breast and ovarian cancer. Read more here.

Download the Court's ruling (pdf file format) here.

European Society of Human Genetics urges caution over use of new genetic sequencing techniques

The use of genome-wide analysis (GWA), where the entirety of an individual's DNA is examined to look for the genomic mutations or variants which can cause health problems is a massively useful technology for diagnosing disease. However, it can also pose major ethical problems if used incorrectly, say new recommendations from the European Society of Human Genetics published in the European Journal of Human Genetics. Read more here.

Study mentioned: van El CG, et al. Whole-genome sequencing in health care. Eur J Hum Genet. 2013 Jun;21(6):580-4. PMID: 23676617

Researchers challenge postmarketing trial practices

Without oversight systems, phase IV trials will continue to be used by drug companies to market products without generating the information that clinicians and policy makers can use to improve care and maintain a more cost-effective health system. Efforts tied to the current focus of research ethics on protecting study participants fail to prevent problems that undermine the social value of research, according to bioethicists from Carnegie Mellon University in Pittsburgh, and McGill University in Montreal. Alex John London, Jonathan Kimmelman and Benjamin Carlisle argue that current research ethics frameworks do not flag drug trials that, while not putting patients at risk, produce biased evidence. Read more here.

Study mentioned: London AJ, et al. Research ethics. Rethinking research ethics: the case of postmarketing trials. Science. 2012 May 4;336(6081):544-5. PMID: 22556237

On the difference between 'disparities' and 'differences'

"There are many definitions of health disparities, but my favorite is disparities are differences that should not exist. This definition reflects the social injustice in how some races and ethnicities suffer more from cancer than others. I like this definition of disparities (or health inequity, as many people are calling it) because it can motivate us to fix the problem - the social, economic, cultural, and political barriers that keep some racial and ethnic minorities from getting cancer prevention, early detection, and state-of-the-art cancer treatment. This obviously can be harmful to racial and ethnic minorities. But this definition is also a problem." Continue reading the American Cancer Society Expert Voices blog here.

Recruitment by genotype for genetic research poses ethical challenges

A potentially powerful strategy for studying the significance of human genetic variants is to recruit people identified by previous genetic research as having particular variants. But that strategy poses ethical challenges to informed consent, as well as potential risks to the people recruited, and it is unlikely that there is a "one-size-fits-all" solution, concludes an article in the IRB: Ethics & Human Research. Read more here.

Study mentioned: Beskow LM, et al. IRB chairs' perspectives on genotype-driven research recruitment. IRB. 2012 May-Jun;34(3):1-10. PMID: 22830177