Posted by Dianne Terry on June 28, 1998 at 11:36:37:
In Reply to: Re: Pick Your Freedoms posted by Dianne Terry on June 28, 1998 at 01:12:37:
"Norms", "policies" and/or "guidelines" are not "laws" or "regulations". I don't think researchers, health care professionals, government policy makers or recipients of any cure/treatment want Xeno tied to government laws and regulations because amending them could never be done in a timely fashion to keep pace with new and positive innovations.
Diabetes and other diseases, the knowledge base to alleviate their misery, the research to improve quality of life, the suppliers of medicines and assorted supplies and on and on - have no geographical boundaries.
The registry and organization for those in need of organs has increased in scale as technology to harvest, transport and implant has improved. Ranking of need, matching of blood and tissue and consideration of distance between recipient and donor are but a few of the factors. To do this a registry is required so valuble organs and opportunities are not lost. Lessons learned from allotransplant will certainly aid the Xeno model. Speaking only for myself, I think it would be wise to take the lessons learned from one model and apply it where reasonable to another model. It makes no sense to transport a donor heart thousands of miles if the exchange of data has not been completed first. The development of a format for registry of data so it can be user friendly on a global basis is a massive task. Wouldn't it be great if a donor heart from a child in Madrid, Spain could be matched to save the life of a child in Philadelphia? Technology has made the world much smaller.
Registry, to me, simply means collection of necessary data, monitoring, follow-up so the procedures can be improved. When you see the concern and committment that front-line organ teams have, I think, for myself, that it would be beneficial if that enthusiasm and level of ethics would carry-over to Xeno. When procedures, in any phase of life, succeed or fail, those involved want to know why so they can up-grade and constantly move in a positive direction. To have some health care team, or researcher constantly repeat an error because they guarded their data, is not ethical and it makes victims of the innocent.
Thank you for the opportunity of this exchange.