Overcoming Barriers to Genetic Testing for hereditary diseases, abnormalities, and other life science research has been one of the most significant challenges for medical scientists in the past half century. Obstacles to testing have included political, social and scientific factors. It was a challenge for molecular biologists to gain access to information required for genetic engineering and other genetic discoveries.
However, the results from genetic studies have been critical to the medical community. Approval of these studies has led to the cure or prevention of many serious genetic diseases, and genetic engineering is on the brink of becoming a reality. However, the politics of genetic technology and communication are complex and still miscommunicated to general population.
One of the main obstacles to scientific communication regarding genetic disease testing, research and other findings is cultural. There are some areas of the world where people do not trust or are resistant to scientific findings. These cultural beliefs can be traced to history and even to religious upbringing. For example, a person may be told that they must believe in the impossible in order to search for something that could be real. Other people may reject information based on lack of scientific evidence or circumstantial evidence.
Fortunately, these barriers to scientific communication about genetic engineering are not insurmountable. However, overcoming cultural resistance to genetic testing will be a significant cultural issue, especially if the research into genetic engineering could be restricted to certain populations, whether intentional or unintentional. Scientists will also need to make great efforts to increase their level of communication with the public. Through public-information programs, they should provide accurate and clear information about genetic technologies. They should be particularly careful to make sure that public understanding of their findings is communicated in an appropriate manner. With an increasing number of people becoming interested in genetic engineering, scientists will likely have to dedicate more time and effort to communicating the results of their studies. There will undoubtedly be a great need for increased communication and cooperation between the different disciplines involved in genetic technology.
Improving The Use of Family Genetic Testing
“Initiatives that may help to improve the use of family genetic testing could include programs focused on educating physicians via presentations at international congresses or as part of online seminars/webinars with live questions and answers (this may be especially important during the COVID-19 pandemic; Laney et al., 2020), design of simpler software tools to help draw digital family trees, and creation of patient educational booklets or online tools to (a) assist communication with patients and (b) facilitate communication between patients and their family members, helping them to explain the need for family screening and overcome the stigma of a rare disease diagnosis,” suggest the researchers.
The barriers included in the review include:
- Cost: This includes the genetic test and counseling, transport of dried blood spot samples, and patient travel costs
- Cultural/societal issues: These include complex family structures, fragmented families, and fear of stigmatization
- Logistical issues: These include lack of trained medical geneticists, lack of genetic laboratories in certain areas, and the geographical spread of populations
- Communication: This includes suboptimal awareness of Fabry genetics and screening benefits among physicians and difficulty tracing relatives
What does this mean for you?
Vita Medical Solutions is proud to do our part in education and the aspirations to over the barriers to genetic testing.
Scientific advances reinforce the ever growing need for genetic testing. Our Vision: To provide all individuals with genetic testing options (Test.), facilitate understanding of personal genetics (Know.), accelerate learning and interpretation of personal genetics (Educate.), create actionable implementation of genetic knowledge (Advocate.).
Our ultimate goal or Mission is to make personalized medicine accessible for every person and their family, and we plan to accomplish this goal through our vision.
Ready to join us on our Mission? Learn more about your personal and family genetic makeup and personalized medicine options through our genetic test offerings. These include:
Even better news, with qualifying insurance, this test can cost you nothing out of pocket. Click here to schedule a call with one of Vita Medical’s Patient Services Consultants to find out your eligibility.
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Test. Know. Educate. Advocate.
Germain D, Moiseev S, Suárez-Obando F, et al. The benefits and challenges of family genetic testing in rare genetic diseases—lessons from Fabry disease. Mol Genet Genomic Med. Published online April 9, 2021. doi:10.1002/mgg3.1666