One of the most important rules in donating organs or bone marrow is to maintain the anonymity of the donor and recipient, including from each other.
But with more people using the internet and social media, there are cases in which identities may be revealed, worrying organizations such as the Japan Organ Transplant Network and the Japan Marrow Donor Program.
In a monthly newsletter published by the latter on Jan. 15, an article called for reinforced measures to prevent letters exchanged between the donor and the recipient from being posted on social media and elsewhere.
The Japan Marrow Donor Program has been allowing the bone marrow donor and its recipient to exchange a maximum of two letters within a year after the transplant, after making sure names, addresses or other details that would reveal their identity are not included.
In recent years, however, there has been an increase in the number of people posting images of the letters on their blogs or social media, or showing them on TV programs. If the person who wrote the letter or their family see it, they can easily find out who their donor is or vice versa.
Therefore, the Japan Marrow Donor Program added a clause to the form of consent signed by donors and recipients not to disclose the letters on social media and other media outlets.
Katsumi Orihara, the group’s chief of donor coordination, said the revision was made precisely because they want to continue allowing letter exchanges between the donor and the recipient.
“When a recipient is a child, he or she writes a letter of appreciation,” which may not be well written but would grab the hearts of donors nonetheless, he said. “If a recipient receives a letter from the donor, it would motivate him or her to go through harsh treatment after the transplant.”
Anonymity is important in order to prevent trouble that may come from knowing who one of the parties is, such as the recipient being asked for financial compensation. In other countries, there have been cases in which one asked the other to join a religious group. There was also a case in which the recipient directly contacted the donor asking for a further bone marrow donation if the recipient’s illness worsened.
When you search online, there are many images of letters exchanged between the two sides. The design of the envelope, if it has a special design, may for instance help identify a donor or recipient.
When coordinators find these images online, they ask the person who posted them to take them down.
“But it’s a private letter so we can’t force them to do so. All we can do is ask, but not everyone complies,” said Orihara.
It’s the same for organ transplant cases. There was a case when a man wrote about his experience of receiving an organ from a brain-dead patient on his blog, repeatedly stating the date when he got the transplant surgery.
Unlike bone marrow transplants, there have only been around 700 organ transplants from brain-dead patients in the past 21 years.
“If the family of the donor looks at the date, they would immediately recognize it was the organ donated by their next of kin,” said Misa Ganse, an official at the Japan Organ Transplant Network.
It’s also troubling for patients who had been soliciting donations to have organ transplant surgery abroad but ended up getting an organ in Japan. They usually have their name and where they live on the website. But when they explain on their website that they stopped asking for funds, it would be easy for families of the donors to find out why.
In other cases, some people post on social media that their friend had donated an organ, identifying the friend by name.
“We can’t forcibly stop individuals from posting things,” said Ganse, adding that the organization will continue to explain what is at risk and ask them to take it down.