Online discussions show that the perception of risk is very personal
Some say we’re culturally obsessed with risk management. You may not agree, but once you get pregnant, and especially as an expectant first-time parent, it can certainly feel that way.
Unfortunately, most people difficulty in accurately assessing risk. These challenges stem from the quality of information that circulatesbut also of prejudices that hinder healthy thinking. Moreover, not everyone agrees on pregnancy risksand much has been written about the over-medicalization of pregnancy which can generate undue worry and unnecessary testing.
In a growing number of pregnancies, people have used an emerging technology called non-invasive prenatal testing (NIPT) – or NIPS (S for screening) – which analyzes tiny fragments of DNA from the placenta that circulate in the maternal blood to assess the possibility that the fetus has certain genetic conditions. The test is non-invasive to the fetus, but involves taking a sample of the mother’s blood.
As researchers examining public perceptions and ethics, our latest research shows how complex it can be for the public to use this test.
NIPT can be performed as early as nine weeks of pregnancy. It can assess the risk of genetic abnormalities such as trisomies 13, 18 and 21, which cause Patau’s, Edwards’ and Down’s syndromes respectively, with relatively high reliability. Although it has the potential, although rarelyto return false positive or false negative results, it has no increased risk of miscarriage like invasive diagnostic tests, such as amniocentesis.
The use of NIPT is increasing worldwide. Some countries now offer it free to all pregnant women. Other countries do this for people deemed “high risk” – a sometimes complicated determination.
Canadian policymakers are now debating whether NIPT should be publicly funded and offered to all pregnant women. This decision comes with challenges. There are issues related to cost and education of patients and practitioners, but also the increase medicalization of pregnancy. Public funding could also have negative consequences for rights of persons with disabilitiessuch as the increase in stigma associated with disability and discrimination against people with disabilities.
Perception of risk
Our recent study found rich NIPT discussions on the social media platform Reddit. Comments from Redditors (Reddit users) were mostly in favor of increased access to NIPT, despite some concerns about the accuracy of the test. The editors were eager to share their views, knowledge and experiences.
Interestingly, a third of the discussions focused on the interpretation of risk perceptions. NIPT results indicate low or high risk, with results often expressed as a ratio or percentage. The writers were trying to make sense of acceptable risk in pregnancy and whether others shared similar sentiments.
Notably, there was no discernible consensus on which outcomes constitute high or low risk. What was low for some was high for others. And even the way the results were presented (eg, percentages versus ratios) changed their feelings about them.
One person, for example, reported an NIPT result of 1:22, to which another replied, “Maybe that will help you think in percentages; there is “only” a risk of 4.55%. Much higher than normal, but somehow the risk seems lower that way. The initial poster replied, “Thank you! That’s a much better number to focus on.
For Redditors confused about the strength or reliability of the numbers, there was plenty to discuss. Some have focused on the test’s ability to screen (determine probability) but not diagnose (confirm with certainty), and many have raised highly technical statistical considerations about statistical expressions of risk such as “sensitivity versus specificity”. and “positive predictive values”.
Others have expressed concern and confusion about what classifies certain pregnancies as “high risk” and why this classification differs across health care systems.
Some were appalled, even dismayed, by the way medical professionals disclosed the results. They felt healthcare workers assumed that patients who tested positive indicating a high-risk pregnancy would want further testing or plan for termination.
For some Redditors who received a positive result from a high-risk pregnancy, the possibility of a false positive has become something to rely on. Stories were shared. “I’ve done a lot of reading and false positives are very common,” wrote a Redditor, which is inaccurate for trisomies 13, 18, and 21, but may be true for rarer conditions like DiGeorge syndrome.
Online anecdotes and interpretations
The Reddit community adds another level of risk subjectivity, offering anecdotes and interpretations that may not be based on statistical evidence. A powerful story can have a huge influence.
A very detailed false negative anecdote spilled over into the discussions, to which another Redditor bluntly replied, “The risk of a false negative is very, very low”, which, again, is an accurate statement. when screening for trisomies 13, 18 and 21.
While the general public struggles to interpret NIPT results and determine what should be considered serious, the situation is similar for medical professionals and policy experts. The policies governing genomic technologies are partly determined by the threshold of what is considered a serious condition. Yet “serious” is incredibly difficult to define and interpret in different contexts.
It is important to note that the value and meaning given to NIPT emerges collectively. As observed in Denmarkwidespread access to prenatal genetic testing can blur the lines between public and private choice, inflaming debates around core social values.
What to do with an emerging technology like NIPT, which many want and will use? Individuals may approach the test with different expectations, perspectives, knowledge, or preferences. Studies show not everyone will use or reject NIPT for similar reasons.
Health care systems will need to consider how NIPT can be delivered to diverse populations in a way that incorporates individual perspectives. As our research shows, social media plays a role in shaping these perspectives. It’s important to think about how best to use complex online spaces to communicate accurate and accessible information that helps people make decisions.