For the past two years, the University of Health and Sciences (OHSU) in Portland, Oregon has been improving on a biolocator search engine that it released in 2014 that, for the first time, allows researchers from institutions from all over the world to search for specific tissue samples from several different collections of cancerous tumor specimens including the “Esophageal Cancer Registry,” “LLS SCOR Interface” for Leukemia and Lymphoma, and the “Prostate Study.” Unlike tissue banks which obtain samples from cadavers, these specimens are biopsies from live patients at a variety of hospitals being treated for cancers of different types, at different stages, and with a variety of treatment options and prognoses. The ultimate goal of this program would be to classify all of these specimens under effective search parameters so that each sample’s specific composition, current prognosis, treatment method and even gene expression, would be catalogued for other clinicians from around the world to find using a sample from their own patient with similar parameters. This development would be revolutionary for practitioners to reference similar patients from all over the world in order and determine the most effective treatment option early on, yet it raises questions of a patient’s rights to privacy compared to the good their sample’s information could do for many others in the world. What amount of confidentiality is expected, especially concerning who exactly could access the information? Could a patient even be obligated to disclose their records because their right to privacy would be outweighed by the potential impact their information would have on other patients?
We all know that in this new age of information and technology, shared access and communication has been revolutionized via the internet to connect between many different parts of the world. At this point in the study of medicine, the world wide web has increased the spread of new techniques such as advanced methods in biopsy collection and the increasing potential of stem cell research. Yet now practitioners have begun sharing clinical data for the purpose of research and programs such as the new SEARCH (Shared Equal Access Regional Care Hospitals) database have been created based on patients from eight different Veterans Affairs Hospitals in the United States diagnosed with prostate cancer. With so much patient data being shared between clinicians, researchers, and between different institutions, the line between patient confidentiality and an institution’s right to access the data for the “greater good” becomes more blurred. While these biopsy samples might be primarily taken to diagnose a patient, does a hospital maintain the right to preserve part of that sample for their research, or even enter the data and/or the sample itself into its own growing database? Or does the patient have the authority to deem what happens to this tissue once it has left their body? Some biopsy samples are taken after a surgical resection where cancerous tissue has been removed, yet does a patient still reserve the right to determine whether all of the tissue must be disposed of without sample collection? Many researchers already request specimens from the OHSU Knight BioLibrary database for samples in their studies. Yet as the developers upload more information from these samples and share it around the world as a tool for patient diagnosis, would the potential impact of sharing biopsies then allow an institution to publish any relevant part of a patient’s medical records as accessible information?
With so much patient data being shared between clinicians, researchers, and between different institutions, the line between patient confidentiality and an institution’s right to access the data for the “greater good” becomes more blurred.
In 2012, the American Medical Association’s (AMA) Journal of Bioethics published a hypothetical case study focusing on a teenage boy named Dylan suffering from depression and thoughts of cutting himself who asks his long-time family physician Dr. Emory for anti-depressants. In this example, the Dylan expresses his right to confidentiality by asking Dr. Emory not to tell his mother, a right he does have as a minor for certain services such as “outpatient mental health” in most states. However, while this doctor-patient confidentiality is designed to protect the patient’s health, Dr. Emory must also weigh this right against the health of society and is authorized to disclose Dylan’s condition to his mother if he thinks Dylan poses as a risk to others. Can one make the argument that this situation compares with one where a patient (A) does not want their clinical data shared on a worldwide database, yet while (A) does pose as an active risk to others, by not sharing their information it could impact a number of current and future patients (B through Z) whose physicians could have used (A)’s information to diagnose and prescribe treatment more effectively?
And yet at the same time, it is all about perspective. In this case, let’s say that while Dylan does not want Dr. Emory to tell his mother anything, he is open to discussing his condition and possible treatments with his grandmother. While Dylan does have the right to protect his information from everyone, this alternate way implies that he can also disclose to certain trusted adults without breaching his confidentiality. Similarly for these databases, it is important to establish who exactly would be allowed to access the clinical data and information: physicians only, maybe researchers as well for future studies, possibly certain parts to the general public? The level of protection and exclusivity in such databases would help establish for patients whether or not they feel their privacy would be breached if shared with mother (the general public) or just with grandma (other physicians).
While developers of these databases at institutions such as OHSU are still refining ways to effectively upload information including the disease type, anatomic origin, and patient demographics with effective search parameters, this program has huge potential and compels both hospitals and their patients to address the common bioethical dilemma of one patient’s right to confidentiality and another’s right to knowledge about potentially life-saving prognoses and treatments that have proven effective for others with a similar diagnosis.
 Wastrado (2014, August 8). New search tool for tissue sample available for cancer researchers. Retrieved October 31, 2016 from http://www.ohsu.edu/blogs/researchnews/2014/08/08/new-search-tool-for-tissue-samples-available-for-cancer-researchers/
 Virtual Mentor (September 2012). Confidential Mental Health Treatment for Adolescents. American Medical Association: Journal of Ethics, 14(9), 695-700. Retrieved Nov 5, 2016 from http://journalofethics.ama-assn.org/2012/09/ecas2-1209.html