GESTIÓN EN SALUD PÚBLICA: DTC genetic testing is booming, but ethical concerns remain

domingo, 19 de agosto de 2018

DTC genetic testing is booming, but ethical concerns remain

DTC genetic testing is booming, but ethical concerns remain

Bioedge

Direct-to-consumer genetic testing is booming, but ethical concerns remain

by Xavier Symons | 18 Aug 2018 |

In a little over a decade, genetic testing company 23andMe has gone from being a small startup in Silicon Valley to a multinational operation with over 5 million users in 48 countries. Despite an order by the FDA to cease marketing its personal genome service to consumers in late 2014, the company now has broad approval to market a variety of products, ranging from ancestry tests to tests for gene mutations related to Parkinson’s Disease, Late Onset Alzheimer's and breast cancer. The company received a boost last month when when pharmaceutical giant GlaxoSmithKline announced that it would purchase a US$300 million stake in 23andMe. GSK will be using data from 23andMe to develop drugs for diseases such as Parkinson’s Disease.

Yet despite the apparent consumer confidence in genetic testing companies, significant ethical concerns remain. Articles in the popular media routinely appear warning users of what they should be aware of before using direct-to-consumer (DTC) genomics services. Experts caution users about the incomplete nature of the tests conducted, the lack of context for users when interpreting the results of the tests, and the lack of scientific data to support the recommendations made to consumers by genetic testing companies. There are also questions surrounding privacy, as the recent data sharing agreement between 23andMe and GSK has made clear.

Dr Andelka Phillips, a researcher at Trinity College in Dublin and the author of a forthcoming book about the direct-to-consumer DNA test industry, suggests that users should think very carefully before requesting a DTC genetic test:

“What I would say to a consumer who is interested in this, is take time to make a decision about using a service, do some research. What is your level of comfort with your data being used for other purposes, shared with insurers or with pharmaceutical companies?... If I have a hereditary health condition in my family, perhaps I might not want to put my data in this system because it might affect my insurance coverage.”

As the cost of genome sequencing decreases, researchers and clinicians are debating whether all newborns should be sequenced at birth, facilitating a lifetime of personalized medical care. Yet a new special report on genome-wide sequencing of infants from The Hastings Center recommends against parents using DTC genetic testing to diagnose or screen their newborns. "Sequencing the genome of every newborn could cause parents to worry needlessly about their healthy baby," says bioethicist Barbara Koenig, one of the co-editors of the special report.

Saturday, August 18, 2018

It’s not an original thought, but with every amazing technological advance comes an unheard-of and very dangerous drawback. Smashing the atom gave us nuclear power and the atom bomb. The automobile gave us hitherto unimaginable mobility and tens of thousands of deaths on the road. The Pill gave women control over their fertility and led to birth rates so low that some countries are in danger of disappearing.

And the mobile phone? Where do we start? This week, with selfies. They give Millennials a buzz, but according to cosmetic surgeons, they also can lead to a psychological disorder which has been dubbed “Snapchat Dysmorphia”. Young women (mostly) are so used to altering their images with apps that they demand the same service from cosmetic surgeons.

“This is an alarming trend because those filtered selfies often present an unattainable look and are blurring the line of reality and fantasy for these patients,” report the authors of an article in JAMA Facial Plastic Surgery.

It would take a sharper mind than mine to define the problem, but our relationship with technology is problematic. We don’t foresee the problems and we can’t control our dependence. Since so much of contemporary bioethics revolves around the proper use of technology, this is something we always have to bear in mind.