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Gene and cell therapies: an introduction for media professionals

Gene and cell-based therapies hold great potential in creating effective therapies for hard-to-treat conditions. This field has developed rapidly in recent decades. There are already approved therapies in Europe which can cure congenital fatal conditions. Journalists and other media professionals may find themselves heading discussions on this topic more frequently, in the context of biology and healthcare, or in terms of the social and ethical implications.

Between popular depictions and misconceptions of gene and cell therapies, and the rate of advancements and change within the field, there is ample scope for them to be misunderstood.

Unfortunately, there are also individuals and clinics who will exploit this misunderstanding, and take advantage of patients and carers whose treatment options are limited.

There is a risk that these misunderstandings and misinformation may affect people’s healthcare choices, and cause them to make a decision which is not ultimately the correct one for them. It may also affect how the wider public – including funders and policy-makers view the field, and how individuals who choose to receive gene and cell therapies are viewed.

If you are providing information about gene and cell therapies to an audience of readers, listeners, or viewers, you have the potential to shape how people think and feel about these therapies.

We have collated resources which will provide a thorough introduction to the field of gene and cell therapy. We hope these will be helpful accurate and balanced information to your audience.

A note on language use

The language used in regulatory and clinicians may differ from those used in the context of patient support or advocacy. For example, you may see the term ‘orphan diseases’ used to refer to certain rare diseases in a regulatory context. (This relates to diseases potentially treatable by ‘orphan medicines’, which you can read about here). Many patients and patient advocates consider this term unhelpful in patient-facing material and other non-regulatory contexts. If you are in doubt about terminology, it may be valuable to consult a patient support organisation for sensitivity reading.

Gene and cell therapy: the basics

Many terms in gene and cell therapy have specific technical meanings, distinct from their colloquial use. The increased coverage of the topic in the media may mean that your group have a partial but uncertain understanding of some terms. It is important to be clear in how you are using a particular term; the disparity between the technical and colloquial use of a term may lead to misinterpretation.

How do gene and cell therapies reach the clinic?

To be approved for clinicalal use, new therapies must go through the clinical trials process and regulatory approval process. After a therapy has been approved, national or regional healthcare providers must arrange a purschase/reimbursement scheme with the therapy manufacturers in order to provide it through their clinics.

Accessing unauthorised or unproven therapies

There are several different channels through which someone might receive a therapy which has not yet been approved for market use.

Ethical and social issues around gene and cell therapies

The subject of gene and cell therapy can be a contentious one. Some people object on religious, ideological or personal grounds to the techniques used in research, to gene editing at an embryonic level, or to the idea of the therapies themselves.

A therapy which has received regulatory approval, and been made available at a regional level, may still prove difficult for some patients to access. Many societies already experience inequality of healthcare, due to financial or social circumstances. A therapy provided free-of-charge through a national health service can still incur heavy costs related to travel, care, and time taken off work, to name a few. Healthcare campaigners have expressed concern that, while advanced therapies can dramatically improve the lives of those receiving them, they carry the risk of all new technologies: that they will amplify existing systemic inequalities. As these therapies are relatively new, very little research has been completed on issues of healthcare equity in gene and cell therapy specifically.

It is difficult to discuss the topic of gene and cell therapy without addressing some of the ethical questions. We would encourage you to bear in mind that your framing may affect how your audience thinks of these therapies, and of the people receiving them.

Specific information and expertise

If you are interested in finding about the use or investigation of gene and cell therapies to treat a particular condition, we recommend that you start with our condition-specific factsheets. We are constantly adding new topics to our factsheets.

We do not have the capacity to put you in direct contact with experts in the field for comment or interview. Our factsheets and Spotlight on Research pages may be a useful starting point for identifying scientific experts, and national support agencies may be able to recommend individuals with lived expertise.

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