NEW YORK – Most UK adults support using genetics to guide medication decisions, at least for those with multiple conditions and who take multiple pharmaceuticals, researchers from Queen Mary University of London reported in a paper in QJM last month.
However, there are areas in which respondents voiced concerns and gaps in knowledge, indicating places for policymakers to drill down on as pharmacogenomics (PGx) programs are implemented for common conditions, researchers said.
Despite strong scientific evidence, the uptake of PGx has been slow outside of a few medical centers that are early adopters, said Emma Magavern, a clinical lecturer in the center for clinical pharmacology and precision medicine in the William Harvey Research Institute at Queen Mary University of London and first author of the paper.
For various drugs, "there are a few decades of really quite solid scientific evidence behind pharmacogenomics improving the risk-benefit profile," she said. She pointed to ViiV Healthcare's Ziagen (abacavir), an HIV medication, as an example of a drug where PGx has caught on. In the UK, testing is required for a particular allele in the HLA-B gene that puts patients at high risk for hypersensitivity to the drug, which can be severe. The allele is seen in about 5 percent of patients.
There are genetic variants that affect response to a multitude of other more commonly prescribed medications, such as antidepressants and proton pump inhibitors, where PGx uptake is more limited.
There are many reasons for slow uptake of PGx, including challenges incorporating routine PGx into clinical pathways and low patient and public awareness.
Still, there's not much known about what the public actually thinks about PGx, Magavern said. She said this paper represents the first national public survey around PGx in the UK.
Magavern and colleagues collaborated with the National Centre for Social Research in the UK to survey a representative sample of adults in the country recruited from the center's British Social Attitudes and Life in Northern Ireland surveys. More than 2,700 people responded to the survey during one month last summer, representing a response rate of 58 percent.
In total, 85 percent of respondents to the survey said that the National Health Service (NHS) should offer PGx testing to people with multiple diseases and who are regularly taking multiple medications, in contrast to 58 percent who thought that the NHS should offer the test to everyone. People who had previously been prescribed medication were almost twice as likely to want to take a PGx test.
Fifty-six percent of respondents indicated they were prescribed medicines regularly, and on average, respondents reported four prescribed medications.
Additionally, nearly 60 percent of respondents said they had previously experienced an issue with a medication, whether a side effect or not experiencing an expected benefit.
"There's a lot of lived experience for everyone, whether it's them, or a family member, or a friend, with that variable response that we know exists in medicine," Magavern said.
Most respondents cited efficacy as the strongest motivator for why they would take a PGx test, with 55 percent of participants citing that as a top reason, followed by 23 percent of respondents who said reducing the risk of an adverse drug reaction would be their primary motivating factor for PGx testing. Those who had reported a previous side effect from a medication were significantly more likely to select avoiding adverse reactions as a motivating factor, while those who reported that they had experienced medication ineffectiveness in the past were more likely to cite increased effectiveness as a motivator for PGx testing.
Gathering this public input is crucial as the NHS starts implementing PGx programs in more common conditions. For example, the UK National Institute for Health and Care Excellence last year issued a guidance document recommending the use of CYP2C19 genotyping to inform the prescribing of Bristol Myers Squibb and Sanofi's antiplatelet drug Plavix (clopidogrel), when available, after a patient experiences an ischemic stroke or transient ischemic attack.
Understanding public attitudes toward PGx will inform development of infrastructure for broader PGx use, Genomics England CEO Rich Scott said in a statement when the paper was published. Genomics England provides genomic sequencing services to help get genomics into routine healthcare at NHS and supports genetic research. The research in QJM was supported by NHS England's Pharmacogenomics and Medicines Optimisation Genomic Network of Excellence and Genomics England.
NHS in late 2022 said that over the course of the next three years, it would work to implement PGx where appropriate as one of its key priorities for embedding genomic medicine into the health system. In a policy paper that same year, the UK government set a commitment to assess PGx's potential to reduce adverse events.
Scott in his statement highlighted that the survey findings show the public is open to use of genetic testing for PGx and that patients want to be able to access their own data. "This is all vital information as we develop the digital infrastructure and evidence on how routine use of pharmacogenomics could become a routine part of healthcare in the coming years," he said.
Genomics England declined a request for additional comment on how the paper's findings could inform PGx initiatives, as it's not currently involved in PGx implementation efforts, a spokesperson said.
In the survey, only about half of participants initially were aware of the role that genetics can play in their response to or likelihood of experiencing a side effect from a medication, researchers found. However, nearly 90 percent of people said they would take a PGx test, demonstrating their interest in precision medicine to address variable response to medications.
That highlights "the need for visible public dialogue around PGx," study authors wrote. They recommended that PGx implementation initiatives be accompanied by the development of educational materials for the public.
As it stands, 93 percent of respondents said they had not encountered patient materials that explained PGx. Most respondents said they would like to see this information provided by healthcare professionals, such as information distributed via leaflets or on posters at general practitioners' offices or hospital clinics. Some of the survey's findings have direct policy implications, according to study authors.
Nearly three-quarters of participants said it would be "very important" to explain PGx was intended to make medications safer and more effective as part of informed consent, and a similar number of respondents noted that patients should be made aware that they may still have an adverse drug reaction or not respond to a medication even with the test results.
And while participants generally were no more worried about possible misuse of genetic data collected for PGx testing than for other routine medical data, there were some areas of slightly higher concern, such as whether police could request access to genetic data or if it could be used to identify family relatedness.
Respondents also had concerns around data-sharing. While most participants, 82 percent, were comfortable with PGx data being shared with healthcare professionals for research purposes, only 10 percent were willing to share data with private companies.
These data access and use concerns, the study authors noted, should be addressed in a policy forum, and data ownership standards should be determined on a national level through policymaking before implementing PGx, they added.
Most respondents, 91 percent, indicated they would want access to their own PGx data, a finding the researchers noted is consistent with previous work. They added that it also "highlights the need for further work to ensure that results are presented in a form that is readily understood."
These issues will need to be addressed to ensure patients feel secure and have trust in PGx as it's implemented more broadly, Magavern said. She added that there's a need for public health campaigns to educate people about genetics-guided prescribing, since people seem interested in the possibility but don't know what resources to seek out.
There's "lots of public support for this," Magavern said.