The gap between the law and bioethics – is it getting too big?

"Not too long ago, gene-editing was the inspiration for fiction and horror films. However, fast forward to 2019 and it is very much a reality and arguably even scarier than we thought. Back in November 2018 a Chinese biophysicist, Dr He, received backlash from his industry when he edited the genes of two young girls, to resist the HIV infection, in a way that their descendants would inherit the mutated gene. Some may argue that making the human race immune to the HIV infection could be nothing but positive, yet, the industry itself (through the Alliance for Regenerative Medicines) has issued a joint
declaration that DNA must not be altered in a way that passes genetic changes on to future generations.

Why is this? The ARM’s concern is that ethical, legal and societal conversations have not caught up with the speed of technological change. They propose, amongst other things, to set up a registry of research into human genome editing and have issued a set of principles for the ethical use of genetic editing. Although none of the 31 clinical trials at present are close to commercialisation, questions about the consequences of these technologies, if they are not adequately regulated, are becoming more pressing. With the US and China being the biggest players in these clinical trials, one does worry whether this is a race for prestige and if the legal and ethical considerations will get forgotten along the way. Technologies such as Crispr, which allow DNA to be altered with greater precision, could transform human livelihood and therefore it is integral that there is a global unified approach to their use.

The ARM have taken a powerful first step towards regulating this fast-moving technology, but now governments and supranational organisations need to speak up before the gap between law and bioethics gets too large to solve.

You can find out more about the principles below:

The Alliance for Regenerative Medicine Releases Statement of Principles on Genome Editing

Biotech companies issue first declaration on human gene editing

The content above was originally posted on CMS DigitalBytes - CMS lawyers sharing comment and commentary on all things tech.