Genetics and Genomics Testing from Young Aussies’ Viewpoint
Genetics and Genomics Testing from Young Aussies’ Viewpoint

The research in Genetics and Genomics is making progress at an accelerating pace which makes it tricky to keep up with the latest finding in this area. However, at the present time, it has become imperative to impart genetic literacy in young adults at the right time. Genetic literacy and personal genomic testing facilitate individuals to have knowledge of their genetic makeup including sporting ability, paternity, ancestry as well as health. The accessibility of such tests is supposed to grow even in vast nations like Australia but a little is known of the viewpoints of Aussies. For the purpose of exploring the same, various focus groups were conducted. During the mid-2015, seven focus groups were formed by 56 members of the public. These people were divided into three age groups 18–24, 25–49, and ≥50 years. 

The focus groups concluded that the awareness of personal genomic testing in general people was low but at the same time some people could infer what does personal genomics entails. With the diversity of genetic understanding in people, the perceptions related to the influence of genetics on health, environment, personality, mental health, and talent also differed. Also, there were blended views on genomic testing but the main focus was on health-related tests. In this way, a number of strategies were formed to help the Australians in understanding, meaning-making, and taking considered decisions about the implications, benefits, and disadvantages of personal genomic tests.

The Genetic Testing in Australia

The Federal and State government as well as private services mainly fund the healthcare system of Australia. There have been different ways for the funding of clinical genetic testing, the patients are supposed to pay partially, fully, or sometimes nothing for the test according to the test and context. Presently, much emphasis is paid on consumer choice and autonomy, and in this way, the private sector genetic testing has been increasing at a fast pace. New opportunities have been served to Australians by giving them direct access to personal testing for health and non-health purposes via online testing companies located outside Australia. Because of the rapid fluctuation of online PGT selling companies, two tests naming Vitro diagnostic medical devices for health disorders and Direct-to-consumer genetic tests were removed from the Australian Register of Therapeutic Goods in 2011. In this way, the access to these tests was restricted but at the same time, it did not affect the access to other genetic tests like parentage, kinship, and ancestry.

Though there has not been deep experimental research about the Australian viewpoints on the experiences with PGT, yet another study originated in the USA has concluded that Australians have minimal interest in pursuing such tests. In 2015, the Genioz (Genomics: National Insights of Australians) was commenced having five research components to understand the experiences and expectations of Australians towards genomics. 

Now, let’s bring to light the methods to know the Australians’ viewpoints on Genetics and Genomics Testing:

  • Recruitment

The main purpose of recruitment was to target that portion of the public which was non-expert. A number of approaches were followed to notify these people. As soon as the people came to know about it, the interested ones tried to reach the researchers via telephone or email. The potential participants were followed up by the researchers and invited to participate in a focus group, the day and time were decided as per the majority. Also, the focus groups were organized at the places that were easily accessible to these people, like Melbourne (Victoria) and Sydney (New South Wales). The best thing about this method was that the participants were gifted

 

  • Focus Group Data Collection 

These groups used a qualitative approach in order to collect the views of people and also the meanings underlying those views. Though the size of each group varies yet there were at least five to eight participants in each group. These groups were divided on the basis of age as well (as we mentioned above). It helped in knowing the differences of interest in testing areas like ancestry, fitness, and planning to have children. The participants filled in various information in the consent form like age, gender, relationship status, educational levels, and their personal experience with genetic conditions or the experience they gained through their family or friends. These groups were audio-recorded and started with an open question to all the participants. After the open question, the next was the transition question and at last, the key focused questions. After giving a brief introduction about PGT Direct-to-consumer testing with complete examples, their perception and interest in PGT were discussed.

The Results

At last, it is concluded that the knowledge and awareness of Genetics and Genomics were restricted to the participants of focus groups. This knowledge was generated through various modes like formal education, news, and popular science media, personal interest, and experience with genetic testing. Keeping in view the lack of awareness about genetic testing in young Aussies, the role of media has been substantially increased in order to spread the information about genetic technologies and their potential applications.


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Amelia Smith in Science
18 Feb 2021