The WRISK project regularly asks contributors to share their perspectives on a range of issues related to risk communication in pregnancy to further understanding of the challenges faced by scientists, clinicians, policy makers, and of course women themselves when trying to navigate risk messaging. These represent individual and personal viewpoints, and are aimed at encouraging reflection and discussion, rather than reaching conclusions.
Dr Alexis Paton is a medical ethicist and sociologist. She is a lecturer in Social Epidemiology and the Sociology of Health and co-director of the Centre for Health and Society at Aston University. Her work examines areas of ethical concern in medicine, with a focus on health inequality, patient safety, decision-making in medicine, and healthcare improvement. She has a particular interest in reproduction in these areas. She is an expert in medical ethics, medical sociology and social epidemiology. She does practical research designed to improve health policy and practice. Outside of academia she is Chair of the Committee for Ethical Issues in Medicine for the Royal College of Physicians, a Trustee of the Institute of Medical Ethics and writes a column for the Independent on all things health and ethics related. This blog is based on a chapter she has written for the forthcoming Routledge Handbook of Feminist Bioethics. Alexis tweets at @dralexispaton.
If you are a woman with a period to track or a pregnancy to monitor, you’ve probably got an app for it. Thanks to these apps you may know down to the second when your next period is due or which food stuff your unborn baby currently resembles. (Why is it always fruit? It seems a strangely biblical choice). That you have a reproductive health app of some kind is both unremarkable but also representative of the fastest growing and largest area of digital health globally.
While advertised as a useful, portable and easily accessible way for woman to “take control” of their reproduction, the rise in app use presents a number of unanswered questions about how these apps are used by women to assess, lessen and make decisions about risk in pregnancy. This is because the use of these apps to help women understand risk, are not without risk themselves. In fact, three major ethical concerns exist on the use of these apps that bear considering before you next log a period or compare your baby’s size to a cranberry.
What counts as quality information?
First, the quality of information in these apps is itself in question. Pregnancy apps are a significant source of information for pregnant women, shaping how they understand and interpret their pregnancy. Recent work has shown women are most likely to turn to these online sources for information about warning signs and concerns they have picked up during self-care and management of a pregnancy. Further research has shown that 70% of mothers who are concerned report using apps to help make decisions about whether the sign is a risk for their pregnancy.
Given how much women rely on these apps for information to make decisions about risk in pregnancy, it may shock you to learn that almost none of the apps on the market are currently monitored for accuracy and quality of information, nor are there existing governance frameworks to ensure accurate information must be provided. Instead apps that offer information about pregnancy are marketed on a “buyer beware” basis—ironic when many of these apps have been designed to help identify risks that need to be acted on by pregnant mothers.
Whose responsibility is it?
Which leads us to the next concern with the use of these apps: how they shift the responsibility for identifying risk, and taking steps to lessen that risk, from the health professionals to the patients. Engaging in any form of self-monitoring implies responsibility for the actions taken as a result of that self-monitoring.
Many apps provide information such as the healthy number of kicks per gestation age, or advice on symptoms such as headache or swollen ankles—important clinical criteria that can signal a serious threat to mother, unborn baby or both. Pregnancy apps are often a barrage of information on what could go wrong, with unvetted advice on how to avoid that happening. Here poor quality of information can mean women make decisions about risks they are willing to take, or risks they are attempting to lessen, that mean they that pregnant women actually end up with poor outcomes that they were trying to avoid. For example, recent research discovered several apps that claimed to provide techniques to avoid chromosomal abnormalities—something that is impossible for a pregnant woman to control or change. And yet these apps exist and are available to the global market.
However, the greater risk of these apps is the precedent and expectation that they set: pregnant women are solely responsible for the harm that befalls them. And this transfer of responsibility occurs regardless of whether pregnant women use these apps. Set up as a way to flag risks, if women fail to use these apps, or use them improperly, the implication is the same: the resulting poor outcomes are also the women’s responsibility to bear.
This is at best a neglectful and at worse a harmful and disproportionate transfer of responsibility to patients who are not trained (why would they be) to understand what information to consider and what to discard as useful for their own particular situation. The alternative, healthcare professionals giving untested or unvetted advice on risk and turning over all responsibility of identifying and mitigating health risk in pregnancy would be viewed as unlawful, unethical and far from best clinical practice.
What risks are actually being taken?
Finally, there are the risks of using the apps themselves. While many are apps designed to share photos or entertain expectant families, the use of all apps comes with the exchange of data for use of the app. Increasingly there are concerns that how much data is taken and how it is used is not being clearly communicated to users. Data harvested from these apps can be used and reproduced several times over by the developers or third parties, never once benefiting the users who have supplied the data. Instead the opposite can occur, with the data being used by groups such as insurance companies and industry employers to monitor the health and wellbeing of their customers, rewarding or punishing those who are in good or poor health. Additionally, the data harvested is often used to reinforce only one way of understanding pregnancy: one where the mother should be happy to be pregnant, vigilant to risk and ultimately happy as a mother. In short, the risk to the women using pregnancy apps is unclear, sometimes intentionally so, making decisions about the risk of using the resources themselves questionable.
Despite appearing to represent an empowering and supportive approach to pregnancy, pregnancy apps likely fail to truly help pregnant women to make informed decisions about their pregnancy. Instead they shift the responsibility of lessening risk to the mothers themselves, all while harvesting private data. Without proper governance, the possible risks and harms caused by their use may outweigh the possible benefits they provide. Until then perhaps all pregnancy apps should follow in the footsteps of cigarette packets, carrying a warning label about what the apps truly offer their users.