1. Introduction
In line with the development of gene technology since the 1980s [
1,
2], the usage of genetic data has become more extensive, which has gradually intensified concerns about genetic discrimination (henceforth GD). Genetic technology can be applied to many domains, such as criminal investigations [
3], personalized medical services and clinical treatments [
4], and genetic risk prediction [
5]. Some individuals have declined genetic testing due to fears about insurance discrimination based on gene defects [
6]. GD has become a more common issue relating to genetic research and brings both social and psychological problems [
7]. GD refers to the differential treatment [
8] given to those people who have apparent or perceived ‘abnormal’ variations in their genetic information compared with the ‘normal’ human genotype [
9]. It is an adverse selection based on genetic information [
10].
Recruitment [
11], insurance services [
12], and partner choice [
13] are the three circumstances widely studied for exploring discrimination associated with genetic information. Firstly, employers might ask for genetic information to evaluate and predict the potential abilities and health conditions of prospective employees. Sometimes, employers might regard genetic information as a precondition for initial employment, the continuance of employment, or promotion [
10], and there are indeed cases where individuals were disqualified or dismissed due to their abnormal genotypes [
9]. Based on private genetic information, differential treatment in the workplace, including promotions, would be adopted to maximize profits and minimize the cost of compensation associated with healthcare [
10]. Some countries have taken measures (e.g., the U.S. [
14,
15], Canada [
16]), while others still have gaps (e.g., China). In China, there are currently some research foci on gene equality as well as legislative protection for the genetic information of employees [
17]. Understanding public acceptance of levels of discrimination related to genetic information is extremely important for improving the rational usage of genetic information in the hiring process. Secondly, genomic stratification and risk classification exist, which cause debate about GD in the context of life insurance [
18]. The insurer might inappropriately use private healthcare information, limiting the coverage of insurance, rearranging the coverage by increasing insurance rates [
18], or adjusting the contents of insurance if the genotype of consumers indicates a risk of severe diseases. In some cases, vital services might be denied [
19] by unfair considerations of genetic information. Most anti-GD policies usually focus on eliminating GD in the field of public health insurance. In contrast to public health insurance, private insurance is more of a commercial product, which is harder to control but also deserves rigorous supervision. Thirdly, genetic counselling before partner choice or pregnancy is popular, especially in countries possessing a high occurrence of customary consanguineous marriage [
20]. Gene testing helps to identify the mutations that underlie recessive disorders or those that might cause psychiatric problems [
21,
22]. However, people with abnormal genome types are worried about being excluded from consideration as a candidate for marriage. Nowadays, genetic matching for marriage is emerging in many dating applications or websites in China, such as Jiayuan.com [
23]. However, these might cause GD. People’s attitudes towards the disclosure of genetic information during partner choice have not yet been well discussed. Additionally, genetic information is also applied in other fields, such as precision medicine [
24], criminal investigations, and so on. Disease predisposition [
25] and personalized medication [
26] achieved by utilizing genetic data have become quite popular in the global medical industry in recent years. Underlying the context of enhanced predictive capacities and healthcare costs, more attention should be paid to the protection of groups that are vulnerable to GD. However, it is critical to first understand the general attitude of the public towards GD and gene testing, which is the main purpose of this article.
Measures and regulations have been used by some countries to address the issues associated with GD. Research shows that North America and Europe are the regions with extensive policy-making activities, while Asia has moderate policy-making activities related to GD [
27]. In 2008, the Genetic Information Non-discrimination Act was passed at the federal level in the U.S., while in 2010, a survey called the Behavioral Risk Factor Surveillance System was conducted to better assess people’s interest in attending gene testing, concerns about GD in the decision of life insurance eligibility and cost, as well as the need for non-discrimination laws in the context of life insurance [
28]. Strict and broad prohibitions against the inappropriate usage of genetic information are expected to reduce the extent of GD [
29]. It is noteworthy that the laws and regulations prohibiting genetic disability discrimination are deficient in China [
30]. Therefore, there is an urgent need for relevant research to support the formulation or improvement of regulations on GD in China.
Previous research shows that Chinese people were willing to explore using genetic information for disease prevention, while there was less awareness of the side effects (i.e., possible negative effects) [
31]. Nowadays, China has become a crucial player in genetics and genomics [
32]. Disparities between cultural traditions and institutional backgrounds lead to differences in attitudes and concepts about genetic information between countries. Although there is some literature about GD, the research on GD in China is insufficient, with only a few studies on forensic genetics in China seeming to indicate GD [
33]. Moreover, those studies have several limitations. Firstly, the lack of both sufficient evidence and robust methodology has degraded the results of GD research [
34]. Secondly, the diversity of the sample population is deficient since the survey objects are only genetic providers in the research for genetic-associated ethical issues in China [
35]. Additionally, genetic testing has become a buyer’s market [
36] because of the falling price and the fierce competition among suppliers [
37]. Considering the limitations listed above and the important role that China plays in the whole gene industry, a systematic study on GD in China is urged. Some questions await answers.
What are the differences in the attitude towards GD among diverse types of people in China? Which scenarios of GD are of concern to Chinese people? In an attempt to answer these questions, we conducted an online questionnaire survey to explore the disparities between attitudes and worrying scenarios of GD and to propose some suggestions for balancing concerns about GD with technology development.
The paper is structured as follows:
Section 2 presents the methodology and data.
Section 3 analyzes the results.
Section 4 analyzes the reasons for the disparities in attitudes towards GD and discusses the contributions and limitations of this research. In
Section 5 we discuss the findings of this study and future research lines.
4. Discussion
Based on the above statistics on the disparity between respondents’ views on GD and gene testing, several analyses of the reasons for these disparities were conducted. Then, we discuss the contributions and limitations of this paper.
4.1. Possible Reasons for Attitude Disparity on GD
4.1.1. Women Maybe More Concerned about the Side Effects of GD
Women have more reservations about discrimination based on genes. On the one hand, it is probably because women are the ones who get pregnant and give birth, which to some extent influences their willingness to undergo gene testing. On the other hand, men, who tend to focus more on promotion and earning money for the family, might be more concerned about the health indications derived from gene testing to help them better prevent potential diseases. It might also be attributed to the willingness to accept innovation, where men show more interest in new technologies [
39], while women are probably more anxious about the side effects brought by modern techniques.
4.1.2. The Younger Group Is Inclined to Show More Sensitivity and Opposition about GD
The knowledge of genes is updated very quickly, and many of its contents have not been studied systematically by previous students. Thus, people in the older group might have been less well educated about the knowledge of genes and GD when they were students. Moreover, people aged 31–45 years are more mature and likely more sophisticated on such discriminations. As a result, the younger age group is inclined to show more sensitivity and opposition toward GD.
4.1.3. More Educated People Pay More Attention to the Negative Effects of GD
Among respondents with different educational backgrounds, those with a doctoral degree have the highest disapproval rate for GD. This might be attributed to the abundant educational experiences providing them with more opportunities to access relevant research and experiments, which may emphasize the negative effects of GD.
4.1.4. Most of the Respondents Worry about Job- or Insurance-Related Discrimination
Through the respondents’ acceptance of genetic testing in different scenarios, concerns about GD are reflected. In China, prenatal genetic diagnosis by gene sequencing [
40] and gene counselling [
41] is common. Genome sequencing is used to make genetic diagnoses in critically ill infants with a rapid turnaround time [
42]. People who recognize the benefits of genetic tests in promoting family happiness and protecting offspring health, might be more interested in genetic testing and counselling before marriage or pregnancy. However, concerns over GD in recruitment and insurance services are more severe due to the potential risk of it being harmful to their future careers and job applications. Another consideration is the disclosure of genetic information to third parties, which might lead to malignant privacy infringements. Therefore, due to worries about job- or insurance-related discrimination [
20], most of the respondents are opposed to using genetic testing in these two scenarios.
4.2. Concerns about GD in Educational, Social, Medical, and Other Scenarios
According to the statistical results, discrimination in education is of the greatest concern to the respondents. The concerns in this area mainly focus on the school admissions-related process. Competition for admission to basic education and higher education in China is fierce. The prevalence of genetic testing poses a high risk of unfairly depriving predisposed students of their rights and opportunities to receive basic or higher education. Such discrimination based on gene testing information may result in obvious inequities in education [
43], which has sparked considerable controversy among the public.
GD on social occasions is of great concern to the respondents. The discrimination based on genetic information may lead to vicious isolation in daily meetings. Persons with abnormal or criminal genetic composition are at risk of being ostracized by society or being exposed to violent treatments [
44]. The stress and negative effects brought about by discrimination are harmful to individuals’ physical and psychological health.
Medical treatment is the third controversial scenario where GD occurs frequently. Since the 1990s, insurance has been the primary concern for the general public due to adverse selection based on genetic test results [
45]. Some medical institutions would categorize and prioritize patients based on their genetic information rather than the sequence of their arrival, and some of them would even reject treating such patients to avoid a negative effect on their reputation. Indeed, the usage and dissemination of genetic data is of great concern to the patients. Customized, efficient medicines and therapies based on personal genetic information have become popular in recent years and are the main direction of medical developments in the future. With the development of technology, the disclosure of private genetic information is hard to avoid. However, disclosure might result in the abuse of such information and GD afterwards [
46], which might be the main reason for the respondents’ concerns about the wrong usage and improper dissemination of their private genetic information. All of these concerns deserve urgent attention by the public when conducting rigorous management of the development of genetic technology and the use of genetic data.
Worries about GD in other real-life scenarios such as fertility, leisure activities, and the sports industry have also been put forward by the respondents. The conduction of genetic testing gives rise to inequality by depriving certain groups of people of their pregnancy and fertility rights. In addition, artificial interference in genetic information such as genetic editing in embryos is of great concern to the public [
47]. Some respondents probably think that this issue is at risk of intensifying social polarization in China.
Shopping is another field where genetic data is widely used. Businesses analyze consumers’ genetic data to price differently and customize discriminatory services based on their preferences. In the sports industry, the prevalence of gene testing poses a negative impact on justice [
48]. The selection might be highly influenced by the genetic information of the athletes rather than their daily performance evaluation, which is arbitrary and might impede the development of people with genetic defects but who are experienced and perform excellently.
Some respondents also state the influence of GD in personal career promotions. The advancement of their careers might be negatively influenced by the consequences of gene testing. Since employers might seriously consider the talent development cost as well as the potential risk based on the predictive health condition of their staff, they are more inclined to select the individual who has proven higher talent and “safety”. In addition, genetic testing might be used by employers to select employees who will always be at work every day and potentially always be available to work. Many people may lose job opportunities [
49].
As for their concerns about the effect of GD on politics, people worry that the division of parties would be determined by personal genetics. People with similar genetic compositions would aggregate together, which is bad for national and ethnic solidarity.
According to all the concerns stated above, the wider application of gene testing deserves wider attention and careful consideration. Genetic technology can benefit our lives only if the data has been applied appropriately and scientifically. Furthermore, consistent control of the occurrence of GD, as well as the prevention of privacy infringement, is of great necessity to establish a better environment for the developments of genetic technology in society.
4.3. Theoretical Contributions
By answering the research question, “What are the differences in the attitudes of GD between different crowds of people in China? What are the scenarios of GD concern by the Chinese?” we claim as theoretical contributions to the wider discussion of GD literature. Our major contribution to GD literature includes: (1) having analyzed the attitudes of different groups in China towards GD; (2) having analyzed attitude disparities between three key scenarios, namely, insurance, partner choice, and recruitment; and (3) having explored other scenarios where Chinese people worry that GD might exist and impact their lives. This is a significant basis for follow-up related research, such as genetic technology acceptance, genetic technology diffusion, and gene industry research, especially as China is a major player and has the largest market in this field. Existing studies have put forward the idea that different groups have different concepts of GD, but few studies have been verified from an empirical perspective. This paper investigated it in the form of a questionnaire survey.
4.4. Practical Implications
The observations generated in our analysis also have practical implications for genetic technology and industry development. This study provides policy enlightenment not only for China but also for other countries. China has always upheld a relatively open attitude towards genetic technology. To some extent, the case of He Jiankui, a Chinese biophysics researcher who edited the genes of twin babies and was jailed for 3 years [
47], caused the regulatory authorities to tighten supervision over genetic technologies. Chinese people’s concerns about scenarios where GD might exist negatively are of referential value for technology developers, industrial circles, and other countries or regions. Specifically, the policy implications of this paper are summarized below.
4.4.1. Develop a Blacklist Mechanism in the Field of Genetic Data Application
Excessive faith in the predictions of genetic information leads to discrimination, bringing social and psychological risks [
50] to individuals who are asymptomatic but pre-diagnosed by gene testing. To better regulate the usage of gene data and avoid the occurrence of discrimination, a blacklist mechanism (i.e., a list of scenarios that should prohibit the use of genetic testing) should be implemented for industries with high risks of genetic data abuse and GD. Regulations are needed to restrict the usage of genetic data in these listed areas, and discriminatory treatments should be prohibited to avoid the occurrence of infringement and inequality.
Nowadays, using genetic data for differential pricing in the insurance field in China has been banned. Similar systems should be set up in other fields as well. For instance, in order to protect labor rights, the application of genetic data should be prohibited in the hiring process; in order to maintain education fairness, the application of genetic data should be prohibited in the educational field; in order to avoid social isolation, private genetic data should not be open to the public; in order to protect personal medical data from being accessed and to avoid unfair treatment of patients, the management of medical gene data should be stricter; and in order to guarantee fair competition, sports competitions should not use genetic data to select players. To safeguard the diversity of the human gene bank, gene screening at the reproductive stage should be regulated, lest the excessive use of genetic data bring devastating disaster to human beings.
4.4.2. Strengthen the Security Regulation for the Commercial Use of Genetic Data
Enacting regulations and laws to restrict the inappropriate use of genetic information and safeguard personal privacy is imperative. In order to promote industrial self-discipline and integrity, first, ethical guidelines on the application of gene testing are urged by Chinese geneticists for the improvement of genetics services in China, as well as filling the cultural gap between China and Western countries to reach an agreement on the ethical, legal, and social issues of genetics in the future [
51,
52].
Initiating genetic non-discrimination laws would protect the public from social discrimination and ease their concerns about GD, thereby enabling them to benefit from genetic technologies [
53]. In the past, only the laboratories of large scientific research institutions could carry out genetic data analysis and processing, and related policies and regulations were mainly formulated for scientific research. Nowadays, many enterprises are also able to carry out this work, so the level of information security level should be a barrier to entry. Regulations should clarify the requirements of commercial organizations’ information security levels concerning genetic data protection in order to prevent information safety accidents.
4.5. Limitations
Inevitably, there are some deficiencies in this research. Firstly, the representativeness of the sample is not guaranteed. The format of an online questionnaire survey excludes some groups of peoples, such as the elderly and those who are not able to conveniently access the Internet. This affects the representativeness of sampling. China has a large population that does not use social media. Secondly, the questionnaire design was not sufficiently refined to allow for explanatory research. This study mainly describes and analyzes the differences in attitudes towards GD among people of different genders, ages, and educational levels. It has not yet analyzed in depth the reasons for the differences. Additionally, the income data was not included in the design of the questionnaire since it is so sensitive that it may cause some respondents to be unwilling or unable to complete the questionnaire. What’s more, open-ended questions were posed for the study of other scenarios. This makes variance analysis impossible, which is significant for determining the different views of different groups.
5. Conclusions
Through the form of a questionnaire survey, this study has analyzed different attitudes of various groups towards GD in the scenarios of partner choice, recruitment, and insurance purchase, as well as other real-life scenarios where Chinese people worry that GD might exist. To facilitate the benign development of industrial ecology, some pieces of policy advice are also suggested.
With regard to future research, some in-depth research can be conducted. For example, insurance can be divided into health and life insurance, and thus a differentiation study can be conducted. Regarding partner choice, an in-depth interview can be carried out to study the causes of differences in views among different groups. What’s more, when it comes to specific scenarios, fairness in education, which is of great concern to the Chinese people, needs a special study in the future.