A woman found out her father’s death was connected to playing bagpipes after he was used as a case study in a medical report.
Doctors from Wythenshawe Hospital described a rare case of what they called “bagpipe lung” in a 61-year-old patient, in the journal Thorax.
Bruce Campbell’s daughter, Erin Tabinor said his family was not told his hobby had been connected to his death.
Read more on BBC.
Looking at the medical journal article, it’s no wonder he was so identifiable. You know the name of his treating doctors, the hospital, his age, and his relevant medical history.
When you have a rare case like this, of course you want to publish it and share what you’ve learned, but you do need consent. In a similar situation where I wanted to present clinical research on a patient with a very rare disorder, I explained to her the likelihood that she would be identifiable and she signed a consent form stating that she was aware that identification would be likely because of her rare symptoms and images I intended to use, and that she had no qualms about being identified. Her generosity of spirit enabled others to learn that although a particular disease was progressive, there were therapeutic interventions that might both improve quality of life and prolong life for those suffering from the disease.
Because I do not have full access to the medical article in this case, I do not know for sure that the doctors failed to obtain informed consent, but even if they did not make a decision to publish until after the patient’s death when the patient’s consent would no longer be possible, then informing the family first was definitely in order. No family should find out the cause of their loved one’s death from a news report. And in the UK, the duty of confidentiality continues after death, so obtaining their consent sounds like it may also have been necessary.
I look forward to reading the results of the inquiry into this ethics matter. I do not damn the researchers/doctors because by sharing the information, they may have protected others from a similar fate. And if they did make any ethical mis-steps, I am confident they will learn from them and not repeat them.