Assignment 1-6 Predictive Genetic Testing 23 and Me PDF

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Assignment 1-6 Predictive Genetic Testing: 23 and Me

No name Ontario Tech University HLSC 3712: Professional Ethics in Nursing Dr. Milly Ryan-Harshman Nov. 16, 2020

2 Assignment 1-6 Predictive Genetic Testing: 23 and Me 23andMe analyzes variations at specific positions of the genome (Annas & Elias, 2014). These variations are called single nucleotide polymorphisms, they have the potential to tell someone about their ancestry and traits (Annas & Elias, 2014). For example, eye colour, hair colour and certain health conditions. It is impossible to change genetics, however it is possible to change behaviour. Direct-to-consumer genetic testing provides people access to their genetic information without necessarily involving a healthcare provider or health insurance company in the process (Annas & Elias, 2014). It may cause individuals to change their behaviours based on test results. The theory of planned behaviour (TPB) and the placebo effect help explain and provide evidence as to why this is true. Furthermore, the ability to practice healthy lifestyle behaviours would be affected if someone had a false sense of security. Also, someone’s ability to practice healthy lifestyle behaviours would be affected if they had a fatalistic approach. TPB started as the Theory of Reasoned Action in 1980 to predict an individual's intention to engage in a behaviour at a specific time and place (LaMorte, 2019). The theory was intended to explain all behaviours over which people have the ability to exert self-control. The key component to this model is behavioral intent; behavioral intentions are influenced by the attitude about the likelihood that the behaviour will have the expected outcome and the subjective evaluation of the risks and benefits of that outcome (LaMorte, 2019). The TPB has been used successfully to predict and explain a wide range of health behaviours and intentions including smoking, drinking, health services utilization, breastfeeding, and substance use, among others. The TPB consists of 6 constructs that collectively represent a person's actual control over the behaviour. The 6 constructs are: attitudes, behaviour intention, subjective norms, social norms, perceived power and perceived behavioural control (LaMorte, 2019). Regarding direct-

3 consumer-testing, this theory can help explain why individuals may change their behaviours based on their test results. This is because the behaviour achievement depends on both the individual's motivation, which is the intention and ability, which is the behaviour control. The behavioral intention is the motivational factors that influence a given behaviour. The stronger the intention to perform the behaviour, the more likely the behaviour will be performed (LaMorte, 2019). The behavioral control refers to a person's perception of the ease or difficulty of performing the behaviour of interest (LaMorte, 2019). Perceived behavioral control varies across situations and actions, which results in a person having varying perceptions of behavioral control depending on the situation. It is very possible to facilitate behaviour change using genetic testing as the catalyst. This is especially the case when disease risks are appreciable. Genetic information based on single-gene variants with low risk probabilities has little impact-either positive or negative-on emotions, cognitions, or behaviour (Sheikh et al., 2015). Therefore, it is clearly apparent that genetic testing results can impact one’s behaviours if their intention is to change their behaviour. If an individual is given information about their genetics regarding future negative health outcomes, they may do everything in their ability to prevent that outcome from occurring. However, this is only the case if an individual chooses they would like to make a lifestyle change. For example, if a woman takes a 23andMe genetic test and the result comes out that there is a mutation on the BRCA and PALB2 gene (Sheikh et al., 2015) this means that the woman has an increased risk of developing breast cancer. Therefore, she may make lifestyle changes such as quitting smoking, limiting alcohol intake, exercising more often and eating healthier to try and prevent breast cancer. The motivation for the lifestyle change is trying to prevent breast cancer from becoming a reality and the preventive measures are recognized as the

4 behaviour control. This behaviour change can only be done if the participant implements effective interventions to prevent negative outcomes and promote positive ones. It is a conscious change, not a subconscious one. The placebo effect also explains why and how individuals may change their behaviours based on genetic test results. The placebo effect is defined as a phenomenon in which some people experience a benefit after the administration of an inactive look-alike substance or treatment (Turnwald, 2018). This substance, or placebo, has no known medical effect. This can be applied to consumer-direct genetic testing as the tests results serve as the treatment in this scenario. There have been various studies that discovered when someone takes a sugar pill or placebo pill they have reported less pain. This is because the brain is actually releasing natural painkillers called endorphins (Turnwald, 2018). Something similar happens when a person finds out about their genes. An article titled What Happens When You’re Convinced You Have Bad Genes demonstrates that DNA tests can have a placebo effect. In this article psychologists at Stanford University recruited 223 participants for a study that would help scientists create personalized nutrition and exercise programs (Zhang, 2018). Two researchers, Brad Thomson and Alia Crum, wanted to investigate how participants would react after they took DNA tests and learned their genetic propensities for exercise and diet (Zhang, 2018). About half of the participants got a fake result for a gene linked to exercise, then had to run on a treadmill. The other half got a result for a gene linked to hunger, then had to drink a 480-calorie smoothie. Those told they had the worse version of the genes quit running earlier and reported feeling hungrier than those told they had the better version of the genes (Zhang, 2018). Curiously, even their lung function and hungerhormone levels appeared to change. Those told they have a greater risk of developing negative

5 health outcomes, exhibited unmotivated, decreasing and depressing behaviours and responses. This proves that the placebo effect can change an individual's behaviour due to both cognitive and physiological responses to stimuli. The placebo effect is very powerful as it creates a stronger connection between the brain and body and how they work together, which affects behaviours, choices and decisions. The placebo effect can initiate very positive and beneficial behaviours effects when used in the correct context. A placebo can be considered ethical and unethical depending on how it is used. It is ethical if a person agrees and is informed of the use of the placebo. If the person is uninformed or any of the information given about the placebo is misconstrued or too general it is unethical. The experimenter must convey altruism when conducting experiments. This is the regard for others (Cushman, 2005). The experimenter must also ensure confidentiality when conducting an experiment involving a placebo effect. On another note, the ability to practice healthy lifestyle behaviours would be affected if someone had a false sense of security. A false sense of security can be damaging to one’s health. If someone receives genetic test results containing that they are negative for genetic mutations leading to an increased risk of developing health conditions such as cancer; they may start to ignore their health. If a healthy, young individual finds out that they do not genetically have any increased, predisposed risk of health conditions they may engage in behaviors that would start to negatively impact their health. For example, if a 21 year old male receives his genetic test results and finds out he is negative for many genetic mutations and that he has no increased risk for developing any life-threatening health conditions. This individual may now choose to engage in behaviours such as smoking, drinking alcohol, unhealthy eating and sedentary behaviour because he believes he is invincible to developing health problems. This is definitely not the case. If this individual chooses to engage in these behaviours he will now have an increased risk of

6 developing many health conditions such as lung cancer, liver cirrhosis, diabetes, coronary artery disease, heart attack and many more. His genetics cannot protect his health from the decisions he chooses to make. Additionally, it is harder to change an unhealthy behaviour once it becomes a habit. A habit can become an addiction and can lead to a very toxic cycle of behaviours that could have been avoided in the first place. This can also be applied to our current COVID 19 situation. Many young people believe they are bulletproof to the virus as they are young and have strong immune systems. However, knowing the information we know now, this is completely false and inconsiderate. You can be a carrier for the virus and not show any signs or symptoms. The effects of COVID 19 can be permanent and irreversible even in young, healthy individuals. The people in your life may be immunocompromised. This can be your parent, sibling, friend and/or co-worker. You can be the reason someone loses their life because of your choices to not social distance, wear a mask, wash your hands and stay home whenever possible. Choices and behaviours are key contributors to health outcomes. Upstream approaches to health are key in preventing disease. The individual should be encouraged to live a healthy and safe lifestyle regardless of predisposed health outcomes. This is how a false sense of security can impact someone’s healthy lifestyle behaviours. Someone’s ability to practice healthy lifestyle behaviours would be affected if they had a fatalistic approach. The quote “44% of people wanted to know about an incidental finding that indicated an adult-onset non-clinically actionable in themselves” (Lemke et al., 2013) from the article titled Perspectives of clinical genetics professionals toward genome sequencing and incidental findings: a survey study helps to provide supporting evidence of this. It proves that

7 people want to know about their fate even though they would not be able to conduct any actions to change it. This could positively or negatively affect someone’s ability to practice healthy lifestyle behaviours. Relating to the case scenario provided, it is possible that Gale may initiate positive or negative behaviours depending on the results of her test. This is because she has struggled with meeting her weight and physical activity goals. Therefore, if she was to receive negative results about her health this may hinder her motivation to work towards achieving her weight and physical activity goals. Gale may believe it is her fate to live with her struggles for the rest of her life because it is predetermined for her and out of her control. On the other hand, the relief of the unknown may be enough to give her peace of mind. She may be content with the results of her fate and try to be the best version of herself anyway regardless of the predetermined outcome. Gale may have a you cannot prevent everything anyway mentality towards her results. Regarding health, especially in this case, fatalism is primarily a coping response to illness rather than an inhibitory belief. Fatalism can be discouraging for an individual because it can imply that they cannot improve their health. This is very untrue, that is why it is very important to consult a health care professional for health and medical advice. A health care professional has a holistic approach towards health and will create a plan that is catered towards meeting specific health needs and reaching specific goals. Genetic testing can reveal mutations in your genes that may cause illness or disease. Direct-to-consumer genetic testing such as 23andMe provides people access to their genetic information without having to involve a healthcare provider (Annas & Elias, 2014). The results can cause individuals to change their behaviours based on test results. The TPB and the placebo effect help explain and provide evidence as to why this is true. A false sense of security greatly

8 impacts healthy lifestyle choices and behaviours. Also, someone’s ability to practice healthy lifestyle behaviours would be affected if they had a fatalistic approach.

9 References Annas, G. J., & Elias, S. (2014). 23andMe and the FDA. New England Journal of Medicine, 370(11), 985-988. Retrieved from https://pubmed.ncbi.nlm.nih.gov/24897100/ Crushman, R. (2005). Ethics terms and terminology. Retrieved from http://www1.lasalle.edu/~price/Hon%20365%20ethics%20terms.htm LaMorte, W. (2019). The Theory of planned behaviour. Behaviour change models. Retrieved from https://sphweb.bumc.bu.edu/otlt/mph-modules/sb/behavioralchangetheories/BehavioralC hangeTheories3.html Lemke, A. A., Bick, D., Dimmock, D., Simpson, P., & Veith, R. (2013). Perspectives of clinical genetics professionals toward genome sequencing and incidental findings: a survey study. Clinical genetics, 84(3), 230–236. Retrieved from https://doi.org/10.1111/cge.12060 Sheikh, A., Hussain, S. A., Ghori, Q., Naeem, N., Fazil, A., Giri, S., ... & Al Tamimi, D. M. (2015). The spectrum of genetic mutations in breast cancer. Asian Pac J Cancer Prev, 16(6), 2177-85. Retrieved from https://www.researchgate.net/publication/274318927_The_Spectrum_of_Genetic_Mutati ons_in_Breast_Cancer The Google of Spit. (2020). Retrieved 13 November 2020, from https://nymag.com/news/features/23andme-2014-4/#print. Turnwald, B. (2019). Learning one’s genetic risk changes physiology independent of actual genetic risk. Nature Human Behaviour. Retrieved from https://www.nature.com/articles/s41562-018-0483-4?WT.feed_name=subjects_human -behaviour

10 Zhang, S. (2018). What happens when you’re convinced you have bad genes. Health. Retrieved from https://www.theatlantic.com/health/archive/2018/12/placebo-effect-dna-tests/577861/...