Welcome to summer! And to our southern readers, sorry about winter.

We have an exciting, if controversial, ethical feast for your consumption this month. We wade into the murky waters of genetic editing and ethics. The genesis (pun intended) for this piece was a confluence of disease awareness days: World Sickle Cell Day (June 19th) and Rare Chromosome Disorder Awareness Day (June 22nd); and bioethics, with The Oxford Global Health and Bioethics InternationalConference (June 26th & 27th ) – more on this below.

There was also this dystopian-titled (Synthetic human embryos created in groundbreaking advance) article in the Guardian just last week. This is to say that the uneasy relationship between genetics and ethics isn’t going anywhere anytime soon.

The opening quote is of course from the wonderful, prescient, and awe-inspiring Jurassic Park. And while Steven Spielberg’s masterpiece played fast and loose with the science, the quote from Jeff Goldblum’scharacter perfectly captures the sentiment that scientific advancements often move at a rapid pace compared with the glacial nature of regulations and laws (just look at ChatGPT and teachers trying to spot cheating; more on that from us next month).

This topic is one that is bound to ruffle a few feathers and so we were equal parts delighted and anxious to weigh in. This month, we are delighted to introduce a new writer to the Rx team, Beth Howe, an early-career medical writer living in Auckland, New Zealand.

Beth spends her days keeping up with the growing body of medical research and producing content to make this information consumable across a number of audiences.

She says that the misinformation and 'fake news' surrounding COVID-19 prompted her to find ways to communicate scientific research and evidence to the people around her.

Beth has produced an excellent deep dive into the ethical implication of gene editing. In her piece titled Cracking the Code: Unpacking the Ethics of Genetic Editing, Beth touches on preimplantation genetic diagnosis, designer babies, saviour siblings, and more.

In this issue, we will be covering:

• Cracking the Code: Unpacking the Ethics of Genetic Editing
• World Sickle Cell Day
• The Oxford Global Health and Bioethics International Conference
• From the vault: Ethics in publishing – Conflict of interest

Happy Reading!

‍

Kindest regards,

Ruth

Cracking the Code: Unpacking the Ethics of Genetic Editing

In this article, Beth discusses the transformative potential of genetic editing for medicine, particularly for treating hereditary conditions using techniques like CRISPR-Cas9.

The article touches on some serious ethical concerns like 'designer babies', 'saviour siblings', and potential unintended genetic abnormalities. The contentious definition of 'disease' is also discussed, with deafness as a poignant example.

Finally, the article addresses the risk of social inequities due to limited access to these technologies, as well as preimplantation genetic screening (PGS) and gene editing in reproductive medicine and cancer treatment.

Read more here

World Sickle Cell Day

As explained above, World Sickle Cell Day was one of the reasons we wanted to focus this month’s theme on genetics and ethics. Sickle cell anaemia is a devastating illness that results in severe pain for those affected and also leaves them vulnerable to infection.

Sickle cell anaemia also happens to be an interesting disease state to highlight with respect to gene editing. It is exquisitely amenable to technologies like CRISPR as it is caused by a mutation in a single gene.

Right now sickle cell trials are being conducted in adults with the disease and are therefore not subject to the ethical quandaries associated with germline editing. However, this is not to say that the allure of a cure with germline editing (rather than just a treatment) won’t shift the needle on what we consider ethical.

The Oxford Global Health and Bioethics International Conference

On theme for this month, The InternationalConference on Global Health and Bioethics, hosted by the University of Oxford, took place on June 26th & 27th. Its purpose is to encourage extensive interdisciplinary dialogue and tackle crucial ethical dilemmas in health.

While we haven’t been privy to anything but the titles of sessions, below are a couple we have our eyes on and that we hope to report on in the coming weeks:

1. Can Digital Health Technologies Democratise Healthcare? (Tereza Hendl)
2. Do we need to rethink bioethics training? (Irene Melamed)

See the full conference program here.

From the vault: Ethics in publishing – Conflict of interest

Ethics is the order of the day, so we thought we’d bring you a historical piece (as salient now as when it was first published) from the wonderful David Woods on conflicts of interest in publishing.

The International Committee of Medical Journal Editors has very clear guidance on declarations for conflicts of interest in publishing. It is expected that this is complied with, but David illustrates an example where the authors have neglected to do so.

While we should extend charity to those involved, we should encourage greater rigour in declaring any relationship, financial or otherwise, between authors and pharmaceutical companies. When we don’t, we serve only to undermine the hard-fought trust in the scientific community.

Read more here.