70. Las enfermedades minoritarias, un reto para la bioética
(Rare diseases: a great challenge for bioethics)
There are currently about 7,000 rare diseases described, affecting about 300 million people in the world. They are degenerative diseases, and in many cases lethal. They tend to have a long and complex therapeutic journey, starting with the difficulties of diagnosis. Therefore, when we speak, we must do so from the triad: sick person, family members and health professionals.
Relevant aspects such as early diagnosis,the day-to-day difficulties for the person and their environment, the importance of early diagnosis, genetic counselling, research with all its implications and the very high cost of drugs, put on the table a series of ethical questions that are dealt with in this book.
The publication is the result of a workshop organized with the collaboration of the Dr. Torrent-Farnell Foundation.