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Spare the donor and donee, leave them alone

AUTHOR:  RELEASE TIME:2009-05-06  SOURCE:

    By Lin Shujuan (China Daily)
    Updated: 2009-05-06 08:07   

   

    A Beijing law worker saving a Shanghai girl's life not once but twice over
    the last two years by unselfishly donating her bone marrow and stem cells
    is a classic heart-warming story that the media wouldn't dare miss.
    But there is one thing I find lacking in the story - precaution to guard
    the long established international practice guaran-teeing the privacy of
    the donor and the recipient, at least for one year after the transplant.
    The privacy policy requires bone marrow donations to be anonymous for at
    least one year or two years in many countries in Europe. Donors and
    recipients may mutually meet afterwards, according to Wang Chun, director
    of the Blood Department of Shanghai No 1 People's Hospital, where Xiao
    Ying received her treatment. Otherwise, there are chances of disputes.
    There have been instances when a donor has demanded compensation from his
    recipient or a recipient has begged his donor for another donation, in
    case of a relapse, which could sometimes end up very ugly, said Wang.
    However, based on his personal estimation, Wang said at least 50 percent
    of his patients get to meet their donors soon after a transplant is
    performed.
    "It is not difficult to find out if one wants to," said the doctor. "It is
    all over the media."
    Du Shiqiang, an official from China Marrow Donor Program (CMDP), an
    organization run by China Red Cross Society, seeking compatible donors for
    people with forms of leukemia, said CMDP had been strictly adhering to the
    international privacy regulation ever since its inception in 2001.
    Du said his organization would also make sure that the donor and the
    recipient are in two different hospitals to avoid all chances of direct
    contact.
    "It is understandable for people to feel a real connection once a
    transplant occurs between the two," said Du. "In that case, we would
    advice them to exchange anonymous correspondence through us."
    Du admits that there are times when CMDP would bring a donor and his
    recipient together for a recruitment drive for bone marrow donors, which
    is very necessary since bone marrow donation has just started in China.
    But the number has been strictly limited to only a few, not more than 10
    so far out of over 1,100 transplants arranged by CMDP over the past few
    years.
    It is hard to acknowledge that the privacy policy is widely ignored in
    China though. Should we blame the media for that?
    Yes, and no.
    You may say more than 1,100 donations is not a small number. But if spread
    over the past eight years and divided among different regions across the
    vast country of China, each donation makes history in the area where a
    donor lives, says Du.
    "Believe it or not, each of the 1,100-odd donors from CMDP has received at
    least one award, either from his employer or the local government," said
    Du.
    Without exception, the local media would pick up stories related to such
    donations, digging into every detail of the donor's life for proofs that
    he or she is an exemplary person.
    I have never doubted about the media's intention to promote life-saving
    bone marrow donations in China, but I doubt if such reporting would
    actually achieve expected results.
    On the one hand, both the donor and the recipient are tempted to break the
    privacy policy as it is so easy to find each other, which might lead to
    unpleasant scenarios as Wang mentions.
    We are living in an era when news is never actually local once it's up on
    the web.
    On the other hand, I doubt if a donor's image as a hero is proper to
    promote bone marrow donations.
    "We don't really like the way the media portrays a donor as a hero as they
    tend to exaggerate the difficulty he has to face or sacrifice. This can be
    misleading as the general public might think it is the responsibility of
    heroes, not ours as common folks," said Du.
    "If there is any difference between a donor and other people, it is that
    they go one step further to extend their helping hands by registering
    themselves with CMDP and choose to help those in need."
    I can't agree more with Du. I've read stories depicting a donor suffering
    from great pain and horrible reactions when stem cells are collected from
    his body. Had I never been a witness to several bone marrow collections, I
    would step back from any donations because of the exaggerated coverage.
    However, I don't think the Chinese media alone should be blamed, even
    though they could have taken a lesson or two from their counterparts in
    Western countries.
    The difference is, in the West they wait, we don't.
    A simple search online reveal many stories related to bone marrow
    donations in countries like the United States or Germany. Most are written
    one year or more, after both parties are allowed direct contact.
    As I read those stories, I feel greatly touched by humanity-based
    generosity and gratitude beyond words can express, and by how the miracle
    of chance has created a strong bond between two strange people.
    As a journalist myself, I am sure that most of my Chinese colleagues would
    agree that this is better journalism -- showing respect for the ethical
    norms related to bone marrow donations while sticking to professionalism
    by telling stories in a true and touching way, which would, in turn,
    promote goodwill in the society.
    I look forward to reading such stories in the coming years like, a donor
    has finally met his bone marrow recipient, both healthy and happy for the
    first time after waiting for two years, wondering about each other.


  
 
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