Exploiting the fiduciary relationship: the physician as information intermediary in assisted human reproduction.

• Author: Gruben, Vanessa
• Position: Canada

Introduction

The Assisted Human Reproduction Act [AHRA] will impose new information disclosure requirements on physicians in the context of assisted reproductive technologies [ARTs]. (1) In doing so, the AHRA exploits the trust relationship between physician and patient. The AHRA requires physicians to collect a wide range of highly sensitive information from those involved in ARTs and forces physicians to disclose this information to a government agency, the Assisted Human Reproduction Agency of Canada [Agency], which may use the information for a number of non-therapeutic purposes. As a result, the Agency will indirectly receive highly sensitive patient information - information which would be difficult, if not impossible, for the Agency to collect directly. Although it may be appropriate for a physician to disclose patient information to a third party under certain circumstances, (2) the changes to the nature of the physician's role under the AHRA are troubling. Indeed, this relationship and the broad purposes for which patient information may be used by the Agency have caused concern among those who work with ARTs. Some have speculated that the "majority of patients wouldn't agree to give information to a government agency," and indeed that these information provisions "will prevent some patients from seeking AHR procedures" altogether. (3) There may be some merit to these concerns. The information requirements imposed by the Agency raise important questions about how the role of the physician vis-a-vis her patient will change, and whether it will challenge the trust inherent in the physician-patient relationship.

The AHRA's Information Provisions: The Physician as Information Intermediary

The AHRA's information collection, use and disclosure provisions exploit the relationship of trust between physician and patient. (4) One of the hallmarks of this relationship is the free flow of information from patient to physician. (5) The AHRA seeks to use this relationship in order to gain access to certain patient information that would otherwise be held in confidence by the physician. Specifically, the AHRA will require physicians to collect, use and disclose health reporting information from donors of reproductive material and those undergoing assisted human reproduction procedures, in other words their patients. (6) Physicians will, in turn, be required to disclose certain health reporting information to various third parties for a number of purposes. (7) Most notable, and the focus of this paper, is disclosure to the Agency.

The relationship between the physician and Agency is a key component of the AHRA. The AHRA exploits the trust relationship between the physician and patient so that the Agency has access to information which would be difficult if not impossible to collect directly from patients. In effect, the AHRA forces the physician to act as an information intermediary for the Agency. (8) The AHRA requires the physician to disclose information collected in the therapeutic context to the Agency for a number of broadly-stated purposes unrelated to the well-being of the patient, described below. Although the details have been left to the regulations, which are not yet published, it is possible that all of the information collected from a patient will be disclosed by his or her physician to the Agency. The Agency has an expansive mandate which may require significant patient information to fulfil.

The information that flows between the patient and the physician in the context of ARTs, and ultimately the Agency, is highly sensitive and wide-ranging. According to the AHRA, "health reporting information" includes one's "identity, personal characteristics, genetic information and medical history." (9) This type of information is considered to be among the most sensitive information about an individual because it "goes to the personal integrity and autonomy of the patient." (10) The consequences of disclosing health information are serious. As the former Federal Privacy Commissioner has observed, a "violation of health care privacy can be catastrophic for the individual ... could change your entire life, and deny you a whole range of opportunities." (11) Some of these consequences are addressed below.

The patient information collected from the physician may be used by the Agency for a number of broadly-stated purposes unrelated to the patient's well-being. (12) First and foremost, the Agency has a mandate to create and supervise a personal health information registry which will contain both identifying and non-identifying information. (13) The Agency has wide latitude with respect to the use of information found in the registry. Importantly, the Agency may disclose non-identifying information relating to the donor of the reproductive material (sperm or ova) to the person undergoing the AHR procedure and the offspring conceived using this material. (14) In addition, the Agency may, on application by any two individuals who have reason to believe that one or both of them were conceived by ARTs, disclose to them whether it has information on whether they are genetically related and if so the nature of the relationship. (15) This is intended to address, in part, the risk that two related persons may unknowingly engage in sexual intercourse. (16)

Notably, the Agency's mandate vis-a-vis this information extends far beyond these important and limited purposes which appear to be for the safety and well-being of those using these technologies. (17) The Agency may use health reporting information found in the registry, as well as additional information otherwise relating to ARTs, for several other purposes. (18) These include the administration and enforcement of the AHRA; the identification of health and safety risks; monitoring potential and actual abuses of human rights; considering ethical issues associated with assisted human reproduction technologies; and for any other matter to which the AHRA applies. (19) There may be a number of "other matters" for which a patient's health reporting information may be used and disclosed because the Agency enjoys several broad powers under the AHRA. The Agency administers and enforces the AHRA; advises the Minister of Health on a wide range of topics relating to assisted human reproduction and the AHRA; monitors and evaluates developments in assisted human reproduction technologies; consults with persons and organizations within Canada and internationally; and provides information to the Canadian public and the professions about assisted human reproduction. (20)

The precise nature of the physician's role as an information intermediary for the Agency will be set out in the regulations. Accordingly, this is an opportune moment to reflect on the physician's new role in the AHRA. In particular, given...