Suppose you need a new knee. Spinal surgery for an aching slipped disc. Maybe a replacement valve for a leaky heart.
These procedures often involve parts taken from someone who died. About 1 million such operations are done in the United States every year. Most are safe and successful.
But sometimes those donated body parts can carry dangerous diseases.
HIV, hepatitis, rabies, deadly bacteria and fungus are among the infections that have stricken some who have had tissue transplants in the past 15 years.
And that was before the ghoulish scandal in which a New Jersey company is accused of selling bones and tissue illegally obtained from the bodies of people too old or sick to be donors. They included “Masterpiece Theatre” host Alistair Cooke, who died of cancer at age 95.
It’s not known if cancer is among diseases that can be passed on from donated tissue, but Cooke’s body was in no condition to be a donor source.
'This can happen to you'
With lax regulation of the donated tissue industry, patients need to protect themselves if they are planning an operation using tissue from a cadaver.
“My focus is to tell people one thing: This can happen to you,” said Steve Lykins, whose 23-year-old son, Brian, died five years ago after a knee operation using donor tissue.
Asking lots of questions is the best defense:
- If you need surgery to fix bones or tissue, ask if donor body parts will be used and if there are alternatives. Some operations can be done using patients’ own bone or tissue, although that means a more invasive procedure and a longer recovery. Artificial tissue or animal tissue also are sometimes options.
- If human donor tissue will be used, “look (your) doctor in the eye and say, 'Do you know that this came from a certified tissue bank and that you’re comfortable with where it came from?” advises Dr. Stuart Youngner, a medical ethicist at Case Western Reserve University. Companies that are accredited by the American Association of Tissue Banks are required to follow that group’s standards including sophisticated testing for germs.
- Get the names of each company that retrieved, processed and distributed your tissue and make sure each one is a member of the American Association of Tissue Banks.
- Have your surgery done in an institution that is accredited by the Joint Commission on Accreditation of Healthcare Organizations. Last year the commission set detailed standards on tissue handling for hospitals and surgery centers it oversees.
- If contacted about donating a loved one’s tissue, find out who’s asking. Then double-check their credentials with your state’s organ procurement organization or with the tissue bank association. A legitimate request comes with a consent form — be sure to get one.
“When people are in grief, they forget, they just can’t process all of that. Sometimes people will give consent over the telephone and not know who they talked to,” said Martha Anderson of the Musculoskeletal Transplant Foundation, an Edison, N.J., tissue bank that claims to be the world’s largest.
- Ask hospitals, tissue procurement groups, funeral homes — anyone involved in helping donated a loved one’s tissue — how that tissue will be used. Joshua Slocum, executive director of the Funeral Consumers Alliance, an advocacy group that monitors the funeral industry, says ask, too, “If the original use that I donated for doesn’t work out, what happens, where do my parts go?”
- If a funeral home is involved, check its record with state regulators to make sure it’s in good standing.
- Consider being a tissue donor and encourage healthy loved ones to do the same. Yale University’s Dr. Gary Friedlaender who works with the American Academy of Orthopedic Surgeons, says: “If these tissues were more widely available, there would be less room for unscrupulous people.”