Scientific MOOCs follower. Author of Airpocalypse, a techno-medical thriller (Out Summer 2017)


Welcome to the digital era of biology (and to this modest blog I started in early 2005).

To cure many diseases, like cancer or cystic fibrosis, we will need to target genes (mutations, for ex.), not organs! I am convinced that the future of replacement medicine (organ transplant) is genomics (the science of the human genome). In 10 years we will be replacing (modifying) genes; not organs!


Anticipating the $100 genome era and the P4™ medicine revolution. P4 Medicine (Predictive, Personalized, Preventive, & Participatory): Catalyzing a Revolution from Reactive to Proactive Medicine.


I am an early adopter of scientific MOOCs. I've earned myself four MIT digital diplomas: 7.00x, 7.28x1, 7.28.x2 and 7QBWx. Instructor of 7.00x: Eric Lander PhD.

Upcoming books: Airpocalypse, a medical thriller (action taking place in Beijing) 2017; Jesus CRISPR Superstar, a sci-fi -- French title: La Passion du CRISPR (2018).

I love Genomics. Would you rather donate your data, or... your vital organs? Imagine all the people sharing their data...

Audio files on this blog are Windows files ; if you have a Mac, you might want to use VLC (http://www.videolan.org) to read them.

Concernant les fichiers son ou audio (audio files) sur ce blog : ce sont des fichiers Windows ; pour les lire sur Mac, il faut les ouvrir avec VLC (http://www.videolan.org).


How to effectively address the need of organ donor families?

Organ donation and the donor family:

"Wrapped in Mourning: The Gift of Life and Organ Donor Family Trauma", a book by Sue Holtkamp.


"Transplantation is made possible because of a new class of patients who have been determined to be dead via neurological rather than cardiopulmonary criteria. This non-traditional way to die, which is commonly referred to as brain death, has created another new category of people: they are family members or significant others of the uniquely deceased, brain dead patient.

While clinical technology associated with transplantation has made remarkable strides in recent years, little has been done to understand the trauma-driven grief of family members of the donor. One reason for the dearth of information about the donor family experience is that transplantation is often perceived as merely a medical procedure. The outcome of such a perception is that the social, spiritual, ethical and personal dimension of the donor’s family experience with trauma-driven grief are often ignored or are undervalued. The stories of these families do not fit the celebratory tone of transplantation and therefore largely go unheard in a society inebriated by hype and posturing."

"It is tempting to believe that the donor family’s grief experience is bound by their own loved one’s trauma. In reality, stressors that impact donor family grief are in place even before the family’s involvement and find roots in the history and context of transplantation and organ donation. Troublesome seeds of mistrust and disquietude are sometimes to be found within medical ethics surrounding this modern miracle."

To effectively address the need of organ donor families, caregivers should read this book – also dealing with meaning and scope of current controversial efforts to expand the donor pool.

About this book:
"Based on 15 years of experience working with organ procurement organizations and donor families, Wrapped in Mourning addresses the heretofore unexplored subject of organ donor family trauma. This book covers the issues surrounding organ donation, including the history of organ transplantation, how organs are procured for transplantation, as well as the medical procedure itself. Each issue is explored with regards to its impact upon donor families. Ways to reduce grief, prevent problems, and increase the benefits of donating organs for the donating family are also discussed."

Reviews:
"Contrasting the joy of recipient families and the positive outcomes of organ donation described by the media enthralled with the wonders of medical technology, 'Wrapped in Mourning: The Gift of Life and Organ Donor Family Trauma' presents a seldom acknowledged aspect of transplantation. As one family member states, 'I'm talking about the darker side of organ donation. It's much more complicated than any news story can convey'."
Death Studies, May 2003
(...)
"This wonderful book provides a prespective that is not often seen - how the donor family is affected by donation. It will be a wonderful tool in the field of organ transplantation and help professionals understand the effects, both positive and negative, on the donor family."
Jennifer Y. Ralston, MSW, Barnes-Jewish Hospital.

"As a hospital chaplain who has witnessed the miracles that can accompany an organ donation, the ill-prepared and grief driven dilemmas and approaches of family members and the generally less than adequate approaches of the professionals called on to step in, this book is a wise informer on these issues and will particularly help professionals feel more comfortable in walking with people through these discussions and also doing more advocacy in the community long before the crisis time warranting decision-making..."
Resources Hotline, Vol. 6, No. 5

Source:
Amazon.fr

Aucun commentaire: