Learning Center
Plans & pricing Sign in
Sign Out

Clinician and Patient Preferences Clash Over Information Sharing


  • pg 1
									EMBARGOED FOR RELEASE until March 18, 2010 – 5:00 PM (EST)
ASN Contact: Shari Leventhal • 202-416-0658 (p) •

Both Organ Donors and Recipients Want to Share Information Before Scheduling

Washington, DC (March 15, 2010) — Most kidney donors and recipients are in favor of
exchanging personal health information that may influence success before scheduling a
living organ donor transplant, while healthcare professionals are more reluctant,
according to a study appearing in an upcoming issue of the Clinical Journal of the
American Society Nephrology (CJASN). The results suggest that clinicians should
consider supporting and facilitating more information sharing before transplantation.

Living kidney donation is a complex decision, with multiple medical, legal, and ethical
aspects. In many situations it can be difficult to know what personal health information is
important to share and what information should be kept confidential. For example,
knowing that a donor has high blood pressure may affect a recipient’s willingness to
accept the gift, or a potential recipient who is HIV positive may worry that this
information could change a donor’s willingness to donate. The situation becomes even
more complex during incompatible kidney exchanges when multiple incompatible
donor-recipient pairs are matched with each other to produce compatible matches. In
these cases, donors and recipients are usually strangers to each other and may be more
reluctant to share personal health information.

Because there is currently no consensus on what information should be disclosed
between potential transplant donors and recipients, Patricia Hizo-Abes (medical
student), Ann Young (doctoral student) and Amit Garg, MD, PhD, FRCPC (all from The
University of Western Ontario and Lawson Health Research Institute, London, Canada),
and colleagues, conducted a survey on the preferences of 43 potential kidney donors,
73 potential recipients, and 41 health professionals towards sharing personal health
information. When considering traditional live donor transplantation, 86% of donors and
80% of recipients said that a recipient’s health information that could influence the
success of transplant should be shared with the donor; 97% of donors and 89% of
recipients said that a donor’s information should be shared with the recipient. When
considering incompatible kidney exchange, 85% of donors and 85% of recipients said
that a recipient’s information should be shared with all donors and recipients involved in
the transplantation; 95% of donor and 90% of recipients said that a donor’s information
should also be shared with all involved individuals.
While the majority of kidney donors and recipients were in favor of exchanging
information, transplant professionals’ opinions varied greatly and tended to be more
conservative. (For example, for incompatible kidney exchanges, only 61% of health
professionals were in favor of sharing donors’ information and only 47% were in favor of
sharing recipients’ information.) These findings indicate that not only do transplant
professionals lack a consensus related to information sharing, but their preferences are
also markedly different from those of their patients.

The authors noted that the rights of any donor or recipient opposed to information
sharing must be respected, but clinicians should not assume to know how much
patients value their confidentiality. In addition, transplant professionals should better
facilitate the sharing of information within legal limitations. “Our results do not advocate
for complete information sharing, but rather consideration for greater information
sharing,” said Dr. Garg.

In an accompanying podcast, William Harmon, MD of the Children's Hospital Boston
(Boston, MA) explains, “This is a very important study, because it’s the first of its kind, in
which we’re actually asking the attitudes of both the donors and the recipients. This
study should lead to additional studies to clarify this.” The podcast will be available
online at and through iTunes on Thursday, March 18.

Study co-authors include Meaghan Cuerden (University of Western Ontario, in London,
Canada), Peter Reese, MD (University of Pennsylvania), Phil McFarlane, MD, PhD,
FRCPC, and Linda Wright (University of Toronto, Canada) for the Donor Nephrectomy
Outcomes Research (DONOR) Network.

Disclosures: The authors reported no financial disclosures.

The article, entitled “Attitudes to Sharing Personal Health Information in Living Kidney
Donation,” will appear online at on March 18, 2010, doi

The American Society of Nephrology (ASN) does not offer medical advice. All content in ASN
publications is for informational purposes only, and is not intended to cover all possible uses,
directions, precautions, drug interactions, or adverse effects. This content should not be used
during a medical emergency or for the diagnosis or treatment of any medical condition. Please
consult your doctor or other qualified health care provider if you have any questions about a
medical condition, or before taking any drug, changing your diet or commencing or discontinuing
any course of treatment. Do not ignore or delay obtaining professional medical advice because of
information accessed through ASN. Call 911 or your doctor for all medical emergencies.

Founded in 1966, the American Society of Nephrology (ASN) is the world’s largest professional
society devoted to the study of kidney disease. Comprised of 11,000 physicians and scientists,
ASN continues to promote expert patient care, to advance medical research, and to educate the
renal community. ASN also informs policymakers about issues of importance to kidney doctors
and their patients. ASN funds research, and through its world-renowned meetings and first-class
publications, disseminates information and educational tools that empower physicians.


To top