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Genetic testing - an opportunity to improve patient experience

Source: Asia Insurance Review | Sep 2019

Global Life & Health People Technology

Some view it as an emerging risk for the (re)insurance industry while others see it playing an important role in patient care and disease management. As applications of genetic testing grow and it affords better opportunities for disease mitigation and treatment, it is simply a matter of glass half-full or half-empty. 
By Anoop Khanna  
Swiss Re’s annual SONAR report 2019 lists genetic testing as one of the top five emerging risks facing (re)insurance industry across the world.
The report says genetic testing raises the prospect of more numbers at high risk from a genetic disease or mortality applying for life insurance, leading to adverse selection.
The report also says people may withhold information about their genetic condition from insurers fearing that they may be denied coverage. “The major challenge for life insurers is to obtain adequate and risk-relevant information during the underwriting process.” 
Genetic testing
A genetic test is generally used to confirm or rule out a suspected genetic disorder. It also helps determine the possibility of developing or passing on a genetic disorder by an individual at some stage in life. Currently, more than 1,000 genetic tests are available for use and newer ones are being developed rapidly.
Speaking with Asia Insurance Review, healthcare professional Dr Anuradha Monga said, “Genetic defects cover a host of diseases ranging from birth defects, congenital malformations, neural tube defects, chromosomal abnormalities like Down syndrome, fragile-X syndrome, metabolic disorders, common multifactorial medical disorders, late-onset multifactorial genetic disorders like coronary artery disease, hypertension and some more.”
She said, “Genetic testing or personalised medicine (PM) has the potential to customise therapy for patients with conditions like cancers with the best response and highest safety margin thereby ensuring better patient care.”
Genetic testing provides an accurate result by demonstrating analytical validity and clinical validity. The clinical utility of the test depends on whether the test outcome provides information about a diagnosis or provides decision support pertaining to course of treatment, management, or prevention of a disease for the benefit of the individual. 
“PM holds the promise for improving healthcare and also helps lower the treatment costs by enabling every affected patient to receive earlier diagnoses and also enables better risk assessments and optimal treatments,” said Dr Monga.
Helps patients become more health literate
Dr Monga said, “Genetic testing makes patients more health literate. This would enable them to minimise the specific health-risk factors and also seek the right protection and ensure that the progression of disease is minimised.
“It is not always that a ‘fault’ in the genetic make-up of an individual implies that he/she would go on to develop a certain condition. This is called ‘incomplete penetrance’ - where the ‘fault’ or mutation is present but causes either fewer or no symptoms of measurable health issues,” she said.
In such cases it would be unfair to those with a faulty gene which, however, may never affect their health in anyway. The ethics of genetic testing are ever evolving.
Can lead to genetic discrimination
‘Genetic discrimination’ is a major problem that confronts genetic testing. It gives rise to privacy issues if access to genetic test can lead to genetic discrimination of an individual by either the insurers or employers.
A Bloomberg Law report quotes Harvard Medical School medical geneticist Dr Robert Green, “Fear of insurance discrimination is a major obstacle for implementation of life saving genomic medicine and genomic research.”
Dr Green said, “It is well recognised that even people who really need genetic testing will sometimes refuse to get it because they are afraid the results will be used against them.”
Scientific and medical research has already proved that in some cases people with ‘faulty’ genes can adopt lifestyle changes to mitigate the risks from the faulty genes.
Of course, genetic testing and its implications can also cause emotional distress and put stress on the person and the family. It also brings in its wake financial implications for the family in terms of disease treatment and long-term care options.
Life insurers and genetic testing
Many genetic conditions are rare enough and hence there isn’t enough data available to understand the person’s risks of adverse clinical outcomes fully. This could be a major problem for life insurers in adequately covering genetic diseases.
Life insurers have, however, an opportunity to use genetic testing to help and protect the insureds in improving mortality and longevity. Life insurers can use genetic testing to identify early markers for cancer and other diseases and then provide programmes to monitor and to mitigate and treat. 
They could also encourage lifestyle changes, which health insurers are also making an attempt to by the use of wearables, disease-specific apps and personal counselling. 
The American Council of Life Insurers has said, “Life insurance underwriting is a holistic evaluation- insurers usually do not make decisions based on one factor like a genetic test. They look at the whole picture, including the steps the person might be taking to manage that condition.”
Genetic testing is currently voluntary in nature. Considering the benefits, limitations and risks, the decision about whether to be tested is personal and complex. Also, the results of genetic tests may not always be very straightforward hence very often it is a challenge to interpret and explain them.
Dr Monga said, “The problem is that the diagnostic market is flooded with a myriad of such tests. In this scenario, it becomes a challenge for insurers to create policies around results of, and reimbursement for, such tests.”
RGA suggests genetic testing should not be required for underwriting or claims
A research paper ‘Genetics and Insurance: Challenges and Opportunities’ published by RGA in April 2019 says genomics, genetic testing, and precision medicine will play a rapidly increasing role in patient care and disease prognostication and ultimately lead to improvements in morbidity and mortality. However, genetic testing should not be required for underwriting or claim adjudication.
The RGA research paper said it is too early to quantify the risk of anti-selection or the impact on population morbidity, mortality and lapse experience with any degree of certainty. The insurance industry needs to continue to support and promote the development of research to gain a better understanding of the impact.
Access to genetic testing can improve patient care and could be incorporated into insurance products for policyholder benefit. With genetic testing becoming more affordable, insurers can monitor the emerging trends in genetic science closely. 
This should also enable insurers to work more closely with regulators, medical professionals, industry groups and genetic counsellors to work out a self-regulatory regime for genetic testing. It may turn out to be a prudent approach for the life insurance industry and the life insurance customers.
Focus more on managing personal health risks and avoiding diseases
A survey in October 2018 by the Economist Intelligence Unit explored the fast-growing regions of Asia, the Middle East and Africa to study how the current healthcare habits might lead to breakthroughs for society as a whole.
The data collected during the survey ‘The future of healthcare: preventative, personalised and precise, tells of a healthcare future that is increasingly preventative, personalised and precise. It is also one that may be far less focused on treatment and more on tailoring lifestyle interventions to manage one’s personal health risk and avoid diseases.
Many of today’s innovations are moving in sync to enable this change. Mobile apps, genetic testing and advanced screenings are just some of the new technologies producing biometric data on an unprecedented scale. A 
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