At the beginning of the year, we already drew attention on our website to a problem that is increasingly affecting patients with Wilson’s disease: dubious or supposedly AI-generated books on health-related topics.
Dubious guidebooks on health topics have been around for years — including books about Wilson’s disease. However, since the widespread emergence of AI, or artificial intelligence, this trend appears to have increased significantly. According to our research, this is particularly noticeable on Amazon in the English-speaking market. There, numerous books can be found that at first glance appear to be serious publications about our rare disease, but on closer inspection raise considerable doubts about authorship, professional quality and reliability. These include, above all, cookbooks, journals and even so-called life guides, which suggest to patients that they provide experience and information about Wilson’s disease.
However, this does not only affect English-language titles. We have also come across books in other languages in connection with such publications, including German, Spanish, Italian and French.
Why this is problematic?
Patients depend on reliable medical information. Dubious books can create a false sense of security, downplay important therapies or give the impression that diet or “natural” measures could replace specialist medical treatment.
This is particularly critical when authors cannot be professionally verified, sources are missing, or specific information on Wilson’s disease is largely absent. For patients, such literature can in the worst case be misleading and dangerous, and may delay treatment that has been established for decades.
How problematic books can be recognised BEFORE buying
Before purchasing literature on Wilson’s disease — especially on large online platforms — it is worth taking a critical look. The following points may indicate that a book is medically questionable or of little help to patients:
1. Who is the author?
Check whether the person can be found in a professional context. Do they have medical, scientific or nutritional qualifications? Do they work at a clinic, university, medical practice or recognised institution? If virtually nothing can be found online about the author, great caution is advised.
2. A cross-check is worthwhile: what else has the author published?
Another warning sign can be unusually broad or mass publication activity. Some authors publish books on a large number of very different diseases within a short period of time — sometimes even in several languages.
3. Check the preview, publisher and book details
If a preview is available, it is worth checking it carefully before buying. Does it contain concrete information about Wilson’s disease? Or is the text general, interchangeable and potentially applicable to many other diseases? Are obviously questionable healing promises made, such as reversing Wilson’s disease, as suggested by the English-language book series “Reversing Wilson’s Disease”?
It can also be a warning sign if there is no recognisable specialist publisher behind the book. Many problematic titles are published independently or via pure self-publishing platforms. This is not automatically dubious, but it should be a reason to take a closer look.
In conclusion: stay critical and ask if in doubt
We would like to expressly encourage patients and relatives to take a close look when buying literature on Wilson’s disease. A professional-looking cover, a promising title or convincing-sounding advertising text does not say anything about whether a book is medically reliable.
If you are unsure, please discuss recommendations from books you have already purchased with your treating physician or a specialised Wilson’s disease clinic. Medical decisions should never be made solely on the basis of a freely available guidebook.
For better orientation, we also provide a list of books that came to our attention during our research on Amazon and that we consider to be potentially dubious. You can download this list here.