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How Uncertainty Influences Lay People’s Attitudes and Risk Perceptions Concerning Predictive Genetic Testing and Risk Communication

The interpretation of genetic information in clinical settings raises moral issues about adequate risk communication and individual responsibility about one’s health behavior. However, it is not well-known what role numeric probabilities and/or the conception of disease and genetics play in the lay understanding of predictive genetic diagnostics. This is an important question because lay understanding of genetic risk information might have particular implications for self-responsibility of the patients. Aim: Analysis of lay attitudes and risk perceptions of German lay people on genetic testing with a special focus on how they deal with the numerical information. Methods: We conducted and analyzed seven focus group discussions (FG) with lay people (n = 43). Results: Our participants showed a positive attitude toward predictive genetic testing. We identified four main topics: (1) Anumeric risk instead of statistical information; (2) Treatment options as a factor for risk evaluation; (3) Epistemic and aleatory uncertainty as moral criticism; (4) Ambivalence as a sign of uncertainty. Conclusion: For lay people, risk information, including the statistical numeric part, is perceived as highly normatively charged, often as an emotionally significant threat. It seems necessary to provide lay people with a deeper understanding of risk information and of the limitations of genetic knowledge with respect to one’s own health responsibility.


What is genetic information?
Genetic information is information about hereditary traits, that is contained in every cell in form of the DNA. The sum of all genetic information contained in every cell is called the genome.
Genetic analysis allows to read parts of the genome that are responsible for specific traits. New technologies are able to read the whole genome, so that all genetic information is known.

Why genetic analysis?
Genetic analysis serves as a means to obtain genetic information for different purposes. In medicine, genetic testing plays an important role in two areas: In iagnostics, genetic information is used to determine a disease, or the possibility that someone could inherit a certain disease.
In prediction, genetic information is used to predict, if someone will get a disease in the future. Gallstones are stones formed within the gallbladder. The term cholelithiasis refers to gallstones in the bile duct. Gallstones in the gallbladder are referred to by cholecystis. Gallstones are formed when the mixture of different components in the bile is out of balance.
Chronic kidney disease is a slowly increasing loss of kidney function over the course of months or years. The term chronic kidney failure means the terminal or end stage of chronic kidney disease that is characterized by a 15% performance level of the kidney or less, making a replacement therapy necessary, i.e. dialysis or a kidney transplant.
Parkinson's Disease (short: Parkinson's) is a disease affecting the central nervous system that leads to dysfunction of and loss of control over movements. Parkinson's Disease mainly affects the elderly but is increasingly diagnosed in an early age because of improved diagnostics.
Bipolar disorder is a mental disorder with periods of depression and elevated mood. It was formerly known as manic depression and belongs to the affective disorders. Affected show involuntary episodic bipolar deflections of motivation, activity and mood, that change to a much larger extent than usual, alternating between depression and mania..

Breast cancer or mammary carcinoma is a malignant proliferation of tissue in the breast.
Breast cancer is one of most common cancers in women.
Systemic lupus erythematosus (SLE), also known simply as lupus, is a rare autoimmune disease in which the body's own immune system mistakenly attacks healthy tissue instead of only fighting off bacteria, viruses and cancer cells. This causes damage to organs and organ systems like the skin.
There are different forms of lupus erythematosus: Cutaneous lupus usually affects the skin. Systematic lupus erythematosus can affect all organs.

Multiple Sclerosis (MS)
is a chronic inflammation of the brain and nerves in the spinal cord, usually exacerbating. It is most common in adolescents and young adults. The cause of the disease is not fully understood. It is assumed that the immune system of the body attacks and destroys the insulating covers of the nerve cells, causing the nerve fibers to insufficiently pass on information.Multiple Sclerosis thus belongs to the demyelinating diseases. As a consequente, patients develop paralyses and involuntary muscle contractions (spasms). What causes the autoimmune reaction is unclear, yet some viruses are suspected to play a role. Genetic and environmental factors seem to play a role in the development of Multiple Sclerosis.
Obesity is defined as an increased accumulation of body fat that exceeds the normal extent. Coronary heart disease (CHD) is a disease in which a waxy substance called plaque builds up inside the coronary arteries that supply oxygen-rich blood to the heart. As a consequence the tissue is not sufficiently supplied with oxygen.