In the scheme of things the example I am about to
share may seem like it was a negative experience; however, I am positive that
the research outcomes have advanced the medical field in a manner that support
families in a way it couldn’t two decades ago.
In 1993 my mother was diagnosed with breast cancer. After
a mastectomy, chemotherapy, and radiation it returned with a vengeance in 1995.
My mother’s oncologist informed her of a high-dose chemotherapy research study
that was taking place at Cincinnati’s (Ohio) Jewish Hospital. This study
involved her admittance to the hospital for approximately 30 days. A percentage
of her blood and bone marrow would be harvested followed by rounds of chemotherapy
treatments. After a couple of days her blood and bone marrow would be
re-introduced to her system. The hope was participating in this program would
give her a 98% chance of never getting cancer again. She agreed. I remember the
day she went to the hospital, the visits three times a week, and the day she
returned home – one day short of 30 days. She did meet many challenges during
this time; adverse reactions to the harvesting and restoring of her fluids,
listening to other patients suffer through their own challenges, and missing
her children who were at home “holding down the fort.”
Because my mother is a statistic in research, her
chance at life and risk to live longer with her family, I am sure others have
benefited. While Bronfenbrenner brings up a great point, “the only safe way to
avoid violating principles of professional ethics is to refrain from doing social
research altogether,” (Mac Naughton & Rolfe, p. 73) without such research
studies as I have described, the public is not able to take advantage of
advances in the medical field, etc.
I regrettably have to add that the cancer did return
and took my mother’s life in 1997. Again, this became part of the research to
make an impact in future cases. Without my mother’s determination to live and willingness
to try new things, our family would not have had the extra time we were given.
Whether they are negative or positive outcomes, families are affected by
research.
References:
Mac Naughton, G., Rolfe, S. A. & Siraj-Blatchford, I. (2009). Doing Early Childhood Research:
International perspectives on theory and practice (2nd ed.). New
York, NY: McGraw- Hill.
Hi Rebecca!
ReplyDeleteI was deeply touched by your story of how research affects families. Your mother made a huge difference in the medical field of research. I am happy for the benefits that your mother and family gained in this process!I never forget stories like this. Thanks for sharing such an inspirational story!
Hi Rebecca,
ReplyDeleteThank you for sharing your family's story about research participation. It truly brings to light the risk/benefit equation. Because of your mother's dedication and willingness to participate in a study that did not provide the ultimate benefit of being cancer free, but it did provide your family with more time and researchers with more knowledge!
Rebecca,
ReplyDeleteI am truly sorry about your mum and I can imagine that this is a very touching story. Like you mentioned in the conclusive part of your post, families are affected one way or the other in the course of research study only that the result of such study helps to improve the living conditions of some other people. Thanks for sharing.