Gene-free: Can parents refuse genetic testing for their child?

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?

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Gene editing and eugenics

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.

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Guest Post: Genetics education, genetic determinism, and the trickle-down effect

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[1] 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.

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Strange brew: opiates from yeast

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?

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The moral imperative to research editing embryos: The need to modify Nature and Science

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

Is Sexual Offending Genetic?


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.[1] 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

Editing the germline – a time for reason, not emotion

Gyngell, Douglas, Savulescu

There are rumours in the scientific community that the first studies involving the genetic modification of a human embryo are about to be published.[1] If true this would be the first case of an experiment in which genes in germ cells (sperm and egg cells) have been intentionally modified.  This has caused some concerns in the scientific community due to the fact that these modification are potentially heritable.  A commentary in Nature, (written by four leading scientists and one philosopher) published an appeal that we “Don’t edit the human germ line”.  Science meanwhile published a commentary which outlines “A prudent path forward for genomic engineering and germline gene modification”. The fact that two of the world’s most prestigious journals are publishing commentaries on human genetic modification shows just how powerful gene editing techniques have become. The rapid speed with which these technologies have developed has taken the scientific community, and everyone else, by surprise. Just three years after the DNA cutting nuclease Cas-9 was first used to modify DNA, scientists have been able to make heritable modifications to yeast, plants, mice, rats, pigs and even primates. It has been claimed that experiments conducted in China, currently under review, have used these same technologies to modify the DNA of human embryos.[2] Continue reading

The discussion that the scientists in Nature and Science called for should remain in realism, not go on to superhumans

Just over a week ago, prominent scientists in Nature and Science called for a ban for DNA modification in human embryos. This is because the scientists presume that now it actually would be possible to alter the genome in a human embryo in order to treat genetic diseases. Consequently, this would result in modified DNA in germ cells that would be inherited to future generations. The scientists wish to have a full ethical, legal, and public discussion before any germ-line modifications will be made. Furthermore, issues of safety are of importance.

The scientists’ statement is of utmost importance and hopefully this ethical, legal, and public discussion will emerge. However, the discussion on germ-line DNA modification is at danger if the debate will be taken to the level of science fictional superhumans, as already has happen. Not only can such discussion cause unnecessary public worry, it also leads the deliberation away from the actual and urgent questions.

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Born this way? Selecting for sexual preference

Doctors Offering ‘Gay Gene’ To Same Sex Couples Wanting Gay Children: apparently Dr. William Strider at the Fertility Center of Chicago suggests that homosexual parents should have the option of increasing the chances of their kid being homosexual:

“When straight couples have children, the majority of them want their children to be straight as well. That is why most straight parents have trouble accepting it when their children announce to them that they are gay,” …  “So it only makes sense that same-sex couples would want children that carried out their same family values of homosexuality.”

The article is likely reporting wrong on what method would be used: germline manipulation sounds like a unproven and risky approach, while PGD is a proven technique that could presumably select based on X-chromosome sequence. And given the topic it is not implausible that Dr. Strider is being misquoted. But let’s take everything at face value: would it be ethical to select for sexual preference?

Biomedical enhancement and the need for more precise conceptions

Much of the discussion about biomedical enhancements is about arguing whether some biomedical enhancement would, or would not be a good, ethical, or efficient means for enhancing a particular human characteristic. In this blog and in other bioethical literature bioethicists discuss the proposed effects that biomedical enhancements would have, for example, to intelligence and other cognitive capacities, empathy, sunny mood, altruism, sense of justice, or to halting climate change. The list is extensive and endless. The discussion on efficacy, ethics, justice, and human nature is an important part of the whole philosophical debate, as is the discussion about the limits of philosophy, reality, and science fiction. However, an important point that might be in need of emphasis would be to take under inspection the very concepts that are the target of enhancement. What do intelligence, sunny mood, altruism, sense of justice, and the-characteristics-that-prevents-us-halting-climate-change really mean?

If the target characteristics are looked at carefully, it seems that much of the discussion can be described as a form of language bewitchment where conceptions of the human language and conceptions of the empirical science of biology are mixed. Just because the human language includes conceptions such as intelligence, altruism, sunny mood, criminal, and sense of justice, it does not mean that there would be any corresponding concrete physical entities to these conceptions.

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