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 Table of Contents  
ORIGINAL ARTICLE
Year : 2019  |  Volume : 14  |  Issue : 6  |  Page : 75-77

Ethical issues of predictive genetic testing for type 2 diabetes mellitus: Attitude of sindhi community


Department of Community Medicine, Government Medical College, Nagpur, Maharashtra, India

Date of Submission19-Jan-2019
Date of Decision22-Jan-2019
Date of Acceptance29-Feb-2020
Date of Web Publication30-Sep-2020

Correspondence Address:
Dr. Sanjeev Mohan Chaudhary
1/3, MIG-2, Dayanand Nagar, Jaripatka, Nagpur - 440 014, Maharashtra
India
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Source of Support: None, Conflict of Interest: None


DOI: 10.4103/jdmimsu.jdmimsu_189_19

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  Abstract 


Background: With the increasing number of individuals affected with diabetes and the significant health-care costs of treatment, the emphasis on prevention is key to controlling the health burden of this disease. Several genetic and genomic studies have identified genetic variants associated with increased risk to diabetes. As a result, commercial testing is available to predict an individual's genetic risk. Although the clinical benefits of testing have not yet been demonstrated, it is worth considering some of the ethical implications of testing for this common chronic disease. Objectives: The objective of this study was to see the attitude of people regarding predictive testing for Type 2 diabetes mellitus (T2DM). Materials and Methods: The study was carried out among 100 patients belonging to Sindhi community. Ethical approval was sought from the institutional ethical committee. Nondiabetic persons more than 40 years of age were included in the study. Patients were asked for their willingness for predictive genetic testing for T2DM, parental history of diabetes mellitus (DM), and certain questions related to the test, such as financial problems, communicating the risk to family and friends, and behavioral change in case of positive or negative test. Results: Majority of the patients were not willing for predictive genetic testing, though they were ready to get sugar testing done to know whether they really had DM. Twenty percent of the patients had a positive family history of DM. Patients said that a positive result of predictive testing would cause undue stress, and also affect the lifestyle of the patient as well as the entire family. As regards appropriate age for testing, patients opined that it would be better if it is done in childhood so that care could be taken for prevention, though the possibility of stigmatization or discrimination could not be ruled out. Conclusion: In general, the attitude of the study patients was negative with regard to the test, which was reflected from doubt regarding the necessity of the test, and risk of discrimination or stigmatization in case of a positive test. As new predictive genetic tests for common, complex diseases such as T2DM are developed and commercialized, it will be critical to the safe and appropriate use of these new applications to consider the potential ethical implications they raise and steps to prevent or ameliorate harms.

Keywords: Attitude, diabetes mellitus, predictive genetic testing, Sindhi community


How to cite this article:
Chaudhary SM, Ukey U, Narlawar U. Ethical issues of predictive genetic testing for type 2 diabetes mellitus: Attitude of sindhi community. J Datta Meghe Inst Med Sci Univ 2019;14, Suppl S2:75-7

How to cite this URL:
Chaudhary SM, Ukey U, Narlawar U. Ethical issues of predictive genetic testing for type 2 diabetes mellitus: Attitude of sindhi community. J Datta Meghe Inst Med Sci Univ [serial online] 2019 [cited 2022 Jan 17];14, Suppl S2:75-7. Available from: http://www.journaldmims.com/text.asp?2019/14/6/75/296809




  Introduction Top


Genetic testing is a relatively new and rapidly emerging field. There are three forms of genetic testing: diagnostic, carrier, and predictive testing. Diagnostic testing involves identifying current disease states. Carrier testing determines whether an individual carries a certain genetic trait. The third type of genetic testing, predictive testing, is used to determine whether a person has a genetic mutation that will lead to a late-onset disorder. This type of testing is usually conducted in otherwise healthy individuals with a positive family history and no symptoms of disease. Examples of disorders for which genetic tests are available are Huntington's disease, cystic fibrosis, breast cancer, Down's syndrome, sickle cell anemia, and phenylketonuria.[1]

Clinical utility (defined as net benefit in improving health outcomes) of genetic testing could be demonstrated through increasing patient activation or positively influencing patient attitudes, beliefs, and health-related behaviors. The relatively scarce research into the clinical utility of genetic testing has produced mixed results; however, some studies have found evidence that providing results of genetic tests for chronic diseases increases patients' preventive behavior.[2] Type 2 diabetes mellitus (T2DM) is a prevalent, chronic condition associated with extensive morbidity, decreased quality of life, and increased utilization of health services. Following the completion of the Human Genome Project and HapMap and the development of high-throughput technologies, scientists are in a much better position to tackle the complex genetic underpinnings of T2DM. The rise of genetic and genomic studies has aligned with the increasing incidence rate of T2DM. A number of commercial tests have already been developed that assay a panel of genetic variants in several genes identified from genome-wide association studies of T2DM. Among the best studied of these are two very closely linked single-nucleotide polymorphisms (SNPs) in the transcription factor 7-like 2 (TCF7L2) gene.[3] More than twenty studies have replicated the association between these two SNPs in TCF7L2 and increased T2DM risk.[4] Professionals have not favored this form of predictive testing due to an awareness of its limitations and its potential for harm. However, little is known about the public attitudes and understanding of such genetic testing in T2DM. The aim of our study was to assess the attitudes of the general population and to explore the influence on these attitudes of knowledge about the illness and the understanding of risk information.

There is now a growing understanding that diabetes runs in families and has a significant genetic basis. In this regard, it is noteworthy that from an ethnographic standpoint, the Sindhi population in India has been both genetically and environmentally at an increased risk of stress, hypertension, and cardiovascular diseases. Considering the nexus of metabolic diseases that include hypertension, obesity, dyslipidemia, and diabetes, it is, therefore, expected that this population may be at an increased risk of these metabolic conditions.[5] Hence, we chose to carry out this unique study among the Sindhi population residing in Central India.


  Materials and Methods Top


This cross-sectional, community-based study was conducted in May 2019, in Jaripatka, which is an urban area under Nagpur Municipal Corporation. This area was selected for feasibility. The institutional ethics committee approved the study. The study patients were married couples in whom both husband and wife were of the age 40 years or more and not having diabetes. A house-to-house survey was carried out. It was decided to start with the first house and cover all the houses till a total of 100 eligible couples were reached. Informed written consent was obtained from the head of the household and the study patients after explaining them the objectives of the study.

Initially, the patients were given information regarding predictive genetic testing for diabetes mellitus (DM). Later, they were asked for their willingness for the test if it was made available, appropriate age for testing to be done, and certain questions related to the implications of a positive test. Self-reported family history of Type 2 diabetes was assessed by asking respondents to report the number of first-degree (mother, father, brothers and sisters, and children) and second-degree (maternal and paternal aunts, uncles, and grandparents) biological relatives with Type 2 diabetes. Four factors related to the implications of a positive test were studied, and for each factor, two questions were asked to each participant. A positive score was given for a positive answer for any one or both the questions related to that factor. For both negative answers, a negative score was given. The four factors studied and the two questions asked related to each factor are as follows:

  • Familial implications: (1) If you turn out to be positive for the test, will you be afraid of getting others from your family tested? and (2) If your family member turns out to be positive, will you be afraid to get yourself tested?
  • Risk communication: (1) If you turn out to be positive for the test, will you be afraid to tell the result to your family? and (2) If your child turns out to be positive, will you be afraid to tell your child about it?
  • Implications for behavioral change: (1) If you turn out to be positive for the test, will you modify your lifestyle? and (2) If your family member turns out to be positive, will you modify your lifestyle?
  • Risk of discrimination: (1) If you turn out to be positive for the test, will you be afraid that it would affect your insurance premium or claim? and (2) If your child turns out to be positive, will you be afraid about his/her marriage?



  Results Top


A total of 100 couples were covered. All the patients belonged to high socioeconomic status, which was evident from the fact that they were all businessperson, residing in bungalows of an elite society of the area. Of them, only five husbands, eight wives, and four couples said that they are willing to get genetic testing for diabetes done if the test was made available to them. Fifteen husbands, ten wives, and ten couples had a positive family history of diabetes among first-degree relatives. Surprisingly, none of them were willing to get genetic testing done, though they were ready to get blood sugar testing done to know whether they really had the disease. When asked about the appropriate age to do genetic testing for T2DM, forty husbands, thirty wives, and ten couples said that it should be done in childhood.

[Table 1] shows the views of the study patients' predictive genetic testing for T2DM. It is seen that majority of the patients were worried about risk discrimination, especially worried about the marriage of their children in case the testing comes out to be positive in them. Wives were more concerned than husbands regarding lifestyle changes to be done in case of a positive test. For other factors, husbands were more concerned than wives.
Table 1: Views regarding predictive genetic testing for Type 2 diabetes mellitus among husbands and wives

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  Discussion Top


We found that, in general, the attitude of the study patients was negative with regard to the test, which was reflected from doubt regarding the necessity of the test, and risk of discrimination or stigmatization in case of a positive test. As there is a dearth of literature regarding such type of issues, we compared our findings with studies related to the attitude of people regarding diseases other than T2DM. Rose et al.[3] found that there exist significant misconceptions among people, and opined that in many cases, misconceptions may be barriers to uptake of genetic testing. Dispelling these misconceptions is an important step in the translation of advances in human genomics into improvements in health. Illes et al.[6] found a substantial proportion of the German population (57%) in favor of psychiatric genetic testing for Alzheimer's disease in general. Physicians were more hesitant than both relatives and the general population concerning predictive genetic testing.

The future will hold many new discoveries and changes of practice for genetic testing. The field is relatively new and always changing. Hence, we recommend that physicians, scientists, and public health professionals should always be prepared to accept new ideas, treatment options, and philosophies. Courses on ethics and genetics should be introduced into the curriculum for physicians and public health officials, who can later be used to percolate these into the community for the benefit of the society.

Strengths and limitations

This being a novel study, it adds to the literature which is very scarce related to this important disease. Focused group discussions will be more useful to attain the objectives, which could not be done in the present study. Another limitation is that the sample size is small, and that too of a particular community, so we cannot generalize the findings to the general population. More studies with larger sample size involving various economic strata are needed, along with interviews of physicians, scientists, patients with diabetes, etc., to have a better idea when such new concepts are being introduced in a population.

Financial support and sponsorship

Nil.

Conflicts of interest

There are no conflicts of interest.



 
  References Top

1.
Fulda KG, Lykens K. Ethical issues in predictive genetic testing: A public health perspective. J Med Ethics 2006;32:143-7.  Back to cited text no. 1
    
2.
Cho AH, Killeya-Jones LA, O'Daniel JM, Kawamoto K, Gallagher P, Haga S, et al. Effect of genetic testing for risk of type 2 diabetes mellitus on health behaviors and outcomes: Study rationale, development and design. BMC Health Serv Res 2012;12:16.  Back to cited text no. 2
    
3.
Rose AL, Peters N, Shea JA, Armstrong K. Attitudes and misconceptions about predictive genetic testing for cancer risk. Community Genet 2005;8:145-51.  Back to cited text no. 3
    
4.
Haga SB. Ethical issues of predictive genetic testing for diabetes. J Diabetes Sci Technol 2009;3:781-8.  Back to cited text no. 4
    
5.
Mamtani MR. Diabetes in Sindhi Families in Nagpur (DISFIN). Available from: https://clinicaltrials.gov/ct2/show/NCT03918525. [Last accessed on 2019 Nov 01].  Back to cited text no. 5
    
6.
Illes F, Bernhardt T, Prell K, Rietz C, Rudinger G, Frölich L, et al. Attitudes towards predictive genetic testing for Alzheimer's disease. Z Gerontol Geriatr 2006;39:233-9.  Back to cited text no. 6
    



 
 
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