By Dr Johnny Sakr Genetic testing is often assessed by asking a familiar question: does it change clinical management? If the answer is yes, the value of the test is relatively easy to explain. It may guide treatment, avoid unnecessary investigations, or improve health outcomes. But many genomic tests produce information that families value even […]
Category: Genetics
Variants of unknown significance in stem cell donation – new dilemmas in genomic practice
By Helena Carley, Kate Sahan, Helen Hanson, Katie Snape, Sarah Westbury, Michael J Parker, & Anneke M Lucassen Current popular discourse surrounding genomics is frequently one of ‘clarity’ and ‘transformation’, concepts projected by the NHS 10 year plan and echoed in the media. Technological advances in genomics over recent years have been impressive: whole genome […]
We don’t know if the babies born from mitochondrial replacement therapy will still develop mitochondrial disease
By Katherine Drabiak Recently, media outlets around the world have been reporting on children born from pronuclear genome transfer (sometimes called “3-parent IVF,” “mitochondrial donation” or “mitochondrial replacement therapy”) at Newcastle Fertility Center in the United Kingdom. Twenty-two women underwent the procedure, which resulted in eight children, who now range in age from six months to over two […]
Unravelling the ethics of synthetic DNA
By Adrian Villalba, Anna Smajdor, Iain Brassington and Daniela Cutas In our paper, we outline the ethical landscape surrounding the synthesis of human DNA. Only small genomes such as those of bacteria and yeast have been synthesized so far, but the creation of full human genomes in the lab is plausible. The idea of crafting […]
If Marc is Suzanne’s father, does it follow that Suzanne is his child?
By Daniela Cutas, Anna Smajdor, Kristien Hens, and Emma Moormann According to the respondents in our study, the short answer is: not necessarily. We drafted a series of vignettes in which we explored the relationships between reproduction, genes, and parenthood. We wanted to understand the impact that the degree of genetic relatedness might have on […]
Genetic research and the collective good: participants as leaders
By Ilaria Galasso and Susi Geiger. Medical ethics has long centered around the question of how to balance the public or common good with individual rights. Different approaches to ethics would prioritize different values in the context of medical research participation. Well-established moral principles provide solid arguments both for an obligation to participate in medical […]
When and why does a genetic variation become a result?
By Rachel Horton, William Macken, Robert Pitceathly and Anneke Lucassen. We’ve each got four to five million ways in which our DNA differs from the ‘standard’ or ‘reference’ genetic code. When our genome is looked at in a test, all these differences are logged. Most won’t affect our health at all, they’re just natural genetic […]
Should we routinely reinterpret genomic results?
By Gabriel Watts and Ainsley J. Newson. Data obtained from genomic sequencing has an interesting quality. Unlike most other kinds of health results, the stored information remains accurate over time, because it reflects a largely stable property of our bodies: our DNA. Of course, during this time, sequencing methods themselves are likely to have advanced […]
Developing a practical resource to improve the ethical standing of gene therapy trials
By Rosie Munday, Hugh Davies and Stephanie Jones with Oxford “A” Health Research Authority Research Ethics Committee Oxford “A” NHS REC is one of the four UK Research Ethics Committees flagged to review gene therapy proposals. Following the philosopher Mary Warnock’s sage advice “I do not believe you can make moral judgements unless, as far […]
Heritable human genome editing: Who decides? Science or society?
By Françoise Baylis Many describe the move from bench to bedside (from basic science to therapeutic or preventive applications) as a sprint – a short quick race. Others suggest that the race (such as it is) is more like hurdles given the many obstacles that must be overcome. Still others prefer to think of the […]