Kuwait is planning to build a complete DNA database of not just citizens but all other residents and temporary visitors. The motivation is claimed to be antiterrorism (the universal motivation!) and fighting crime. Many are outraged, from local lawyers over a UN human rights committee to the European Society of Human Genetics, and think that it will not be very helpful against terrorism (how does having the DNA of a suicide bomber help after the fact?) Rather, there are reasons to worry about misuse in paternity testing (Kuwait has strict adultery laws), and in the politics of citizenship (which provides many benefits): it is strictly circumscribed to paternal descendants of the original Kuwaiti settlers, and there is significant discrimination against people with no recognized paternity such as the Bidun minority. Plus, and this might be another strong motivation for many of the scientists protesting against the law, it might put off public willingness to donate their genomes into research databases where they actually do some good. Obviously it might also put visitors off visiting – would, for example, foreign heads of state accept leaving their genome in the hands of another state? Not to mention the discovery of adultery in ruling families – there is a certain gamble in doing this.
Overall, it seems few outside the Kuwaiti government are cheering for the law. When I recently participated in a panel discussion organised by the BSA at the Wellcome Collection about genetic privacy, at the question “Would anybody here accept mandatory genetic collection?” only one or two hands rose in the large audience. When would it make sense to make mandatory genetic information collection? Continue reading
Dr Christopher Gyngell (Oxford) comments on the HFEA’s decision to give green light to UK researchers to genetically modify human embryos for research. A clear analysis of the most common concerns, and a suggestion for what direction the debate should take.
The UK became the first country to officially approve gene editing research in human embryos on Monday. The HFEA decision means experiments in which the genes of embryos are manipulated will likely begin at the Francis Crick Institute within the next few months.
Gene editing (GE) technologies are immensely powerful. They have already been used to manipulate mosquitos so they cannot carry diseases like malaria or Zika. They have been used in medicine to reprogram human immune cells to target cancer. When used for research purposes, they promise to greatly increase our knowledge of genetics and human heredity. This will lead to a better understanding of disease, which in turn will allow better treatments – including better drugs.
The following is a transcript of an interview conducted by Jim Brown from Canadian Broad Casting Corporation’s program, The 180, on 3 December between Margaret Somerville and Julian Savulescu
Margaret Somerville is the Founding Director of the Centre for Medicine, Ethics and Law, the Samuel Gale Chair in Law and Professor in the Faculty of Medicine at McGill University, Montreal. She’s also the author of the new book ‘Bird on an Ethics Wire: Battles about Values in the Culture Wars’.
Julian Savulescu is Uehiro Chair in Practical Ethics and Director of the Oxford Uehiro Centre for Practical Ethics at the University of Oxford.
JB: Julian Savulescu, if I could begin with you. You argue that there is a moral imperative for us to pursue gene editing research. Briefly, why do you think it’s so important for us to embrace this technology?
JS: Genetic engineering has been around for about 30 years, widely used in medical research, and also in agriculture, but gene editing is a new version of genetic engineering that is highly accurate, specific, and is able to modify genomes without causing side effects or damage. It’s already been used to create malaria-fighting mosquitoes, drought-resistant wheat, and in other areas of agriculture. But what’s currently being proposed is the genetic modification of human embryos, and this has caused widespread resistance. I think there’s a moral obligation to do this kind of research in the following way. This could be used to create human embryos with very precise genetic modifications, to understand how we develop, why development goes wrong, why genetic disorders occur. It could also be used to create embryonic stem cells with precise changes that might make subsequent stem cells, cancer-fighting stem cells, or even stem cells that fight aging. It could also be used to create tissue with say, changes to understand the origins of Parkinson’s disease or Alzheimer’s disease and develop drugs for the treatment of those diseases. This is what I’d call therapeutic gene editing, and because it stands to benefit millions of people who die every year of painful and debilitating conditions, we actually have a moral imperative to do it. What we ought to show more concern for and perhaps ban, is what might be called reproductive gene editing – editing embryos to create live-born babies that are free of genetic disease or perhaps more resistant to common, late-onset diseases or even enhanced in various ways. If we’re concerned about those sorts of changes in society, we can ban reproductive gene editing, yet also engage in the very beneficial research using genetically modified human embryos to study disease.
JB: And Margaret Somerville, what concerns you about this technology?
MS: Well, I’m interested in the division that Julian makes between the reproductive gene editing and what he calls the therapeutic gene editing. I’m a little surprised that he might not agree with the reproductive gene editing – that is, you would alter the embryo’s germline, so that it wouldn’t be only altered for that embryo, but all the descendants of that embryo would be changed in the same way. And up until – actually, up until this year, there was almost universal agreement, including in some important international documents, that that was wrong, that was ethically wrong, it was a line that we must never step across, that humans have a right to come into existence with their own unique genetic heritage and other humans have no right to alter them, to design them. Julian uses the term genetic engineering – to make them, to manufacture them. Where we would disagree completely is with the setting up of what can be called human embryo manufacturing plants, that is, you would create human embryos in order to use them to make products that would benefit other people, you would use them for experimentation, for research. And Julian’s right, we could do a great deal of good doing that – but there’s a huge danger in looking only at the good that we do. And what we’re doing there is we’re using human life as a product. We’re transmitting human life with the intention of killing it by using it as a product, and I believe that’s wrong. I think that human embryos have moral status that deserves respect, which means they shouldn’t be treated just as products.
by Dominic Wilkinson @Neonatalethics
A critically ill infant in intensive care (let us call him Jonas) has serious congenital abnormalities affecting his liver and brain.1 Doctors looking after Jonas suspect that he may have a major genetic problem. They have recommended testing for Jonas, to help determine whether he does have this problem.
However, Jonas’ parents have refused consent for the genetic test. They are concerned that the test could be used to discriminate against Jonas and against them; they have repeatedly indicated that they will not agree to it being performed.
Could it ever be ethical to perform genetic testing on a child against parental wishes?
A study published last week in the journal Cell has led to speculation that a powerful new gene editing technique is about to be developed.
Gene editing has received widespread media coverage over the past few months. Most of the excitement has centred on a specific gene editing technique, the CRISPR-cas9 system. Research conducted with CRISPR-cas9 on human embryos has been highly controversial, at least partly because some people fear it will lead to gene editing being used to alter the human germline for clinical applications, and will have unpredictable effects on future generations.
Written By Johanna Ahola-Launonen
University of Helsinki
In bioethical discussion, it is often debated whether or not some studies espouse genetic determinism. A recent study by Tuomas Aivelo and Anna Uitto give important insight to the matter. They studied main genetics education textbooks used in Finnish upper secondary school curricula and compared the results to other similar studies from e.g. Swedish and English textbooks. The authors found that gene models used in the textbooks are based on old “Mendelian law”-based gene models not compatible with current knowledge on gene-gene-environment-interaction. The authors also identified several types of genetic determinism, that is, weak determinism and strong determinism, which both were present in the textbooks. The somewhat intuitive remark is that genetic education has to have a strong trickle-down effect on how people understand genes, and that we should be careful not to maintain these flawed conceptions. Furthermore, it would be useful to separate the discussion on genetic determinism into the terms “weak” and “strong”, of which the strong version is undoubtedly rarer while the weak is more prevalent.
A recent series of papers have constructed a biochemical pathway that allows yeast to produce opiates. It is not quite a sugar-to-heroin home brew yet, but putting together the pieces looks fairly doable in the very near term. I think I called the news almost exactly five years ago on this blog.
People, including the involved researchers, are concerned and think regulation is needed. It is an interesting case of dual-use biotechnology. While making opiates may be somewhat less frightening than making pathogens, it is still a problematic use of biotechnology: millions of people are addicted, and making it easier for them to get access would worsen the problem. Or would it?
Chris Gyngell and Julian Savulescu
Human genetic modification has officially progressed from science fiction to science. In a world first, scientists have used the gene editing technique CRISPR to modify human embryos. While the study itself marks an important milestone, the reason it is truly extraordinary is the scientific community’s reaction to it. In refusing to publish this study on ethical grounds, the world’s two leading science journals Nature and Science, appear to be demonstrating a lack of clear and consistent thinking on ethical issues. Continue reading
Do genes make sex offenders? Are rapists and child molesters driven by biology or environment?
An article published last week in the International Journal of Epidemiology provides compelling evidence for a genetic component to risk of sexual offending. The study found that sons or brothers of convicted sex offenders are 4 to 5 times more likely than randomly selected males to be convicted of a sexual offence. Half-brothers of sex offenders, in contrast, are only twice as likely as controls to be convicted of such offences. The study estimates on this basis that genetic factors contribute about 40% of this variability in risk of offending. Environmental factors shared between siblings, such as parental attitudes, were estimated to contribute only 2% of this variability. Continue reading