JMIR Publications

ABSTRACT

Background:

Chimeric antigen receptor (CAR) therapy is a novel cell editing technology and innovative form of cancer immunotherapy. An individual’s immune cells (T-cells) are removed from the body, engineered to target and limit the growth of cancer cells, and reinfused into the patient’s body. The one-time treatment is expensive ($500,000 plus hospital costs), and requires specialized care to treat and manage the associated side effects, such as cytokine release syndrome (CRS), and other serious health issues including cognitive confusion, infertility, secondary malignancies, and compromised long term quality of life. At the same time, CAR T has been highly successful for patients with advanced blood cancers and no remaining treatment options. The CAR T landscape is changing rapidly, and product approvals have outpaced the capacity for researchers to collect long term evidence related to survival or predictive biomarkers that might better prioritize patients. Because CAR T is offered exclusively in urban cancer centres with access to cell manufacturing capacity, equitable access has been challenging. At the same time there is considerable demand and social hype about CAR T as a cancer cure despite the risks and uncertainty of the technology.

Objective:

We aimed to determine the dominant perspectives and nature of the information on CAR T-cell therapy available to the public in the online environment.

Methods:

In this qualitative study, we conducted a comprehensive search of websites including professional, medical, corporate, health-based, news media, and blogs to capture the diversity of online sources and their perspectives presenting information on CAR T-cell therapy. Fifty-one webpages met the study criteria and comprised the data set in this review. The content of the sites was reviewed and analyzed using a critical and interpretive descriptive lens.

Results:

We classified the website information into four dominant major themes characterizing CAR T-cell therapy: 1) patient stories of success, magic and hope; 2) medical science explainers; 3) economic perspectives; and 4) ethical discussions and complex arguments. With the exception of the sites that presented ethical discussions and complex information, the online environment positioned CAR T as revolutionary, curative, and the future of cancer treatment. Side effects were generally minimized, and collective dilemmas such as sustainability for the healthcare system, equitable access, and issues of prioritization were frequently sidelined or absent.

Conclusions:

The persuasive tone of online CAR T information combined with the increasingly blurred distinctions between research and care in genetic medical technologies suggests that obtaining informed consent or refusal may place too much onus on individual patients. In an evolving technological landscape such as CAR T, determining the acceptable risks and benefits is a question that ethically requires broader, as well as more inclusive, societal deliberation.