Reproductive Technologies

Should Gene Editing Be Compulsory?

Written by Julian Savulescu

Hypothetical Case 1: Enzyme Replacement Therapy for Gaucher’s Disease

Consider a hypothetical version of a real life disease, Gaucher’s Disease. Gaucher’s disease is an inherited disorder caused by a genetic mutation. The mutation means an enzyme–  glucocerebrosidase — is not produced. A a result, glucerebrosides (fats) build up, damaging cells. This can cause bone fractures, liver enlargement, and bleeding but most importantly, brain damage. Once this has occurred it is irreversible.

Enzyme Replacement Therapy (ERT) is now available and for the purposes of this hypothetical case, the treatment offered, if given from the moment of birth, will prevent all damage (in real life current enzyme replacement treatments do prevent most symptoms, but do not affect nervous system involvement).

In our hypothetical case, a child is born to parents known to carry the mutation for Gaucher’s Disease, and prenatal testing has already confirmed that the baby is affected. ERT must be started at birth in order to prevent brain and other damage. However, the parents are Christian Scientists and refuse medical treatment. They believe prayer can cure their child’s condition.

Doctors are concerned the missing enzyme needs to be replaced before the child’s brain is damaged. They take the case to court where judges agree that therapy is in the child’s best interests.

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Why It’s Important to Test Drugs on Pregnant Women

By Mackenzie Graham

Crosspost from The Conversation. Click here to read the full article.

The development of accessible treatment options for pregnant women is a significant public health issue. Yet, very few medications are approved for use during pregnancy. Most drug labels have little data to inform prescribing decisions. This means that most medicines taken during pregnancy are used without data to guide safe and effective dosing.

The United States Food and Drug Administration recently published draft ethical guidelines for how and when to include pregnant women in drug development clinical trials. These guidelines call for “the judicious inclusion of pregnant women in clinical trials and careful attention to potential foetal risk”. The guidelines also distinguish between risks that are related to the research and those that are not, and the appropriate level of risk to which a foetus might be exposed. Continue reading

Video Series: John Harris Defends Gene-Editing in Human Embryos

Novel gene editing technologies, such as CRISPR/Cas9, allow scientists to make very precise changes in the genome of human embryos. This could prevent serious genetic diseases in future children. But the use of gene editing in human embryos also raises questions: Is it safe? Should prospective parents be free to choose the genetic characteristics of their children? What if they want to use gene editing to have a deaf child, or a child with fair skin and blue eyes? Should gene editing be regulated globally, or should each country have their own legislation? In this interview with Katrien Devolder, John Harris (Professor Emeritus, University of Manchester &  Visiting Professor in Bioethics, King’s College London) answers these and other questions, and defends the view that we have the strongest moral obligation to gene-edit human embryos, not only to prevent disease but also for the purpose of enhancement.

Womb Transplants and Child-Centred Surrogacy

 

Julian Savulescu

Womb transplants are again in the news as Richard Paulson, president of the American Society for Reproductive Medicine (ASRM), said there was no reason to believe that the treatment could not work for transgender women at recent conference in Texas.

The ethical issues of performing a womb transplant for a transgender women are substantially the same as the issues facing ciswomen.

The most important ethical consideration in the UK for a womb transplant is distributive justice. Limited health care resources should not be used for womb transplants because there are more cost effective methods of assisted reproduction available. However if an individual wishes to use their own funds for such a procedure, they should be made aware of the risks (which are very significant), and the alternatives, such as surrogacy.

The best interests of the future child is another critical consideration. The moral status of the fetus is a topic of much debate. However, even if we consider abortion to be acceptable, and deny that the fetus has a moral status that accords it its own interests, in cases where the mother plans to carry the pregnancy to term, the fetus represents the future child who does of course have interests (albeit that they are to be weighed against the mother’s own interests, and that the mother is responsible for making decisions on their behalf).

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Good Enough Lives – Procreative Satisficence

By Dominic Wilkinson @Neonatalethics

 

Should parents undertake prenatal testing? Is there a moral reason to prevent disability in your future child through embryo selection?

In a special Moral Philosophy Seminar yesterday evening, Professor Tom Shakespeare, from the University of East Anglia, gave a nuanced and multi-faceted argument against the arguments advanced by Julian Savulescu and Jeff McMahan in favour of embryo selection. In particular he attacked Julian’s Principle of Procreative Beneficence (PB)

Procreative Beneficence (shortened version): when considering different possible children, based on relevant available information, couples should select the child who is expected to have the best life*

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Four myths about IVF in older women

Dominic Wilkinson, @Neonatalethics

Reports that a 62-year-old Spanish woman has given birth after IVF treatment have led many to question whether there should be age limits with such treatment. Lina Alvarez, a doctor in north-west Spain, isn’t the oldest person to have had success with IVF. Earlier this year, in India, Daljinder Kaur is said to have given birth at the age of 72, prompting calls from the Indian Medical Council for a ban on fertility treatment in women over the age of 50.

In many countries where there is funding assistance for IVF there is a limit to obtaining treatment over a certain age. In Britain, for example, the bar is set at age 42. But Alvarez received private treatment. So why care about her age? And what business is it of the rest of us whether she has access to IVF?

There are several arguments that typically surface in debates about age and fertility treatment – and they are all deeply flawed. Continue reading

Should we prevent Zika microcephaly using birth control?

Dominic Wilkinson, University of Oxford, @Neonatalethics

The World Health Organisation is to hold an emergency meeting after considerable concern about the zika virus in South America. The epidemic has been of considerable concern particularly because it has been linked to microcephaly (unusually small heads) in newborn babies that can lead to potentially devastating brain problems.

There is fear that this virus (if it is the cause) could spread throughout the Americas, including North America. There is no vaccine or treatment for the virus, and no known treatment for children who suffer brain damage in the womb. Officials in Columbia, Ecuador, El Salavador and Jamaica have recommended that women avoid or defer becoming pregnant to prevent their babies being affected. But is it ethical to use birth control to control Zika microcephaly? Continue reading

Defaults, status quo, and disagreements about sex

Scott Alexander has a thoughtful piece about who gets to set the default in disagreements about what is reasonable. He describes a couple therapy session where one member is bored with his sex life and goes kinky clubbing, to the anger of his strongly monogamous partner. Yet both want to stay together at least for the sake of the kids. Assuming the answer is an either-or situation where one has to give up on their demand (likely not the ideal response in an actual couple therapy setting), the issue seems to boil down to who has the unreasonable demand.

It resonated with another article I came across in my news flow today: What It’s Like to Be Chemically Castrated. This article is an interview with a man who wanted to be chemically castrated in order to manage his sex addiction and save his 45-year marriage. Is this an unreasonable intervention?

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Legally Competent, But Too Young To Choose To Be Sterilized?

In the UK, female sterilisation is available on the NHS. However, as the NHS choices website points out:

Surgeons are more willing to perform sterilisation when women are over 30 years old and have had children.

Recent media reports about the experience of Holly Brockwell have detailed one woman’s anecdotal experience of this attitude amongst medics. Ms. Brockwell, 29, explains that she has been requesting sterilization every year since she was 26. However, despite professing a firmly held belief that she does not, has not, and never will want children, her requests have so far been refused, with doctors often telling her that she is ‘far too young to make such a drastic decision’. In this post, I shall consider whether there is an ethical justification for this sort of implicit age limit on consenting to sterilization. Continue reading

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

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