An important part in gaining ground in the medical treatment and scientific research is the Human biospecimen(HB).
HB accessibility for research has been critical for becoming more aware of the target of precise medicine . Findings from HB research has produced a newfound comprehension of human biology and discover and treat health problems, in addition to diminishing the chance of future illness . However, many intense questions have been asked about informed consent, large scale data sharing, confidentiality and, commercialization, who gets access to research results, and lastly the ability to withdraw.The story of Henrietta Lacks, her family, and the creation of HeLa(named after the first two initials of her name) cells has been a spark for policy change within the medical community , including major regulatory change proposed by the United States for informed consent for biospecimen research.
The HeLa conflict and public opinion in the advancement in biospecimen research strategy, and the need for informed consent approaches that have realistic and balanced views of autonomy within an expanded ethical structure.Historical background:Henrietta lack was a thirty year old black woman who was married with five children. She was diagnosed with a very abnormally belligerent form of cervix cancer and treated at john hopkins hospital in 1951. Without her knowledge nor permission samples of her cervix tissue was taken from her during her treatment, then without her knowledge they were then passed along to researchers. Scientist had tried for many fruitless years to grow cells outside of the human body.
After much time is soon became clear that henrietta’s cells were able to not only survive but grow continuously forever. Why does this fit the discussion:When henrietta was diagnosed many didn’t feel as though her cancer was very serious because cervix cancer at the time was considered non-invasive, however wesley telinde did believe that cervix cancer could still spread. Telinde wanted to prove his theory and he knew john hopkins was a good place to conduct his study because many poor black women were seeking free treatment there. Her “participation” in the study was seen as pay back for the free treatment. His requested the help from George Gey, head of the tissue research at hopkins, who wanted desperately to be the first to grow human cells outside of the human body.
Telinde sliced away healthy pieces of henrietta cervix tissue to Gey. Also the treatment given to henrietta was very immoral compared to today’s standards. Henrietta’s doctor placed radium tubes inside her cervix and sewed it up. Is there any way to defend the behavior of those involved: Upon hearing the basic facts of this case,many would just brush it off and say that it was common practice during the time. Which is unfortunately true.
But the principle of autonomy was violated because i believe the doctors and surgeons who were supposed to take care of her, were unable to make a rational and un-influence decision because they were more interested in achieving their own goals than helping henrietta survive. On the other hand not much could be done for cancer during those days let alone cervical cancer however, she and her family could have still been compensated. Secondly, the principle of benevolence was broken because if the doctors did not feel the need the to tell the patient or her family(before or after her death) about the research being done on her and her removed cells. I believe that it is the good of the patient and their family to inform them of any research being done on them.
Also it is for the good of the patient to always truly understand what they are agreeing to, which is what wesley telinde neglected to do. Because she was ill informed and her cells were taken without