1. Introduction

1.1 Rationale

With the advent of direct-to-consumer (DTC) genetic testing, individuals in Saudi Arabia have newfound access to personal genomics without the mediation of clinical settings [1]. This shift presents both opportunities—such as personal health insights and ancestral exploration—and challenges, particularly concerning privacy and data governance [2]. While national efforts such as the Saudi Human Genome Program emphasize the clinical and research benefits of genomic data, the general public remains variably informed about genetic privacy, data sharing risks, and the relevant legal safeguards [3].

1.2 Scope of the Problem

In many global contexts, public attitudes can significantly influence the adoption and success of genomic initiatives [4]. When individuals lack trust or knowledge about data protection measures, they may be reluctant to engage in genetic testing or research, hindering the advancement of precision medicine [5]. Research from Western settings suggests that clarity regarding data handling and robust regulatory frameworks can boost consumer confidence [6]. However, little is known about how these dynamics play out in Saudi Arabia, where cultural norms regarding family privacy and social stigma around genetic conditions may amplify concerns [7,8].

1.3 Study Objectives

This cross-sectional survey aimed to:

• Assess levels of knowledge about genetic privacy and relevant laws (e.g., PDPL) among Saudi adults.

• Evaluate public attitudes toward sharing genetic data for health or research purposes.

• Investigate current practices regarding DTC genetic testing, including motivations and perceived risks.

• Examine associations of demographic and psychosocial factors with reported willingness to share genetic information.

By illuminating the KAP landscape, we hope to inform educational campaigns and policy refinements that protect individual rights and foster a supportive environment for genomic innovation [9].

Figure 2: Original survey illustration

2. Methods

2.1 Study Design and Sampling

The manuscript reports an online cross-sectional survey of Saudi citizens aged 18 years or older, able to read Arabic and access the internet, from Central (Riyadh), Western, Eastern and Southern groupings. It claims stratified random selection from a national registry and a target of 1,500; registry access, sampling frame, stratum allocation, coverage, weights and invitation records must be supplied.

2.2 Survey Instrument

A structured questionnaire was developed based on prior KAP studies on genetic privacy [11,12]. It comprised five sections:

• Demographics: Age, gender, education, region.

• Knowledge: Basic facts on genetics, awareness of PDPL, understanding of genetic data usage.

• Attitudes: Trust in healthcare vs. commercial entities, perceived benefits, and risks of sharing genetic information.

• Practices: Past engagement with DTC genetic tests, type of test, counseling, data-sharing experiences.

• Willingness to Share: Hypothetical scenarios (e.g., sharing data for research, commercial, or national database).

The manuscript reports a pilot of 50 respondents and a Cronbach’s alpha of 0.81 for attitude items. The questionnaire, item wording, scoring, pilot inclusion, validity and reliability calculations require verification.

2.3 Data Collection

The manuscript reports collecting responses by an email or SMS link in January–June 2023 and obtaining electronic consent. It reports 1,276 complete responses and 224 incomplete records, but the number invited, contacted and initiated is not stated. The reported 85.1% is 1,276 divided by the target of 1,500; it is not a verified survey response rate.

2.4 Ethical Considerations

The manuscript reports King Faisal University IRB approval KFU-KAP-2023-C2, electronic consent, de-identification and withdrawal without penalty. The approval, consent text, registry access authorization, actual data handling and withdrawal procedures require independent verification.

2.5 Statistical Analysis

The manuscript reports descriptive analyses, chi-square tests, ANOVA and logistic regression of reported willingness to share with healthcare trust, PDPL awareness, education and other covariates. The outcome coding, treatment of unsure and missing responses, sample size for each model, reference categories, weights, diagnostic checks and exact output must be provided.

3. Results

3.1 Demographic Profile

The manuscript reports 1,276 complete respondents, 58% female, and mean age 32.6 years (SD 9.4; range 18–70). Demographic counts and sampling claims require source verification.

Table 1. Reported participant demographics (N=1,276)

3.2 Knowledge of Genetic Privacy and PDPL

The manuscript reports a mean knowledge score of 4.3 (SD 2.1) out of 10 and that approximately 24% identified the PDPL as relevant to genetic data. The exact question, answer key and scoring require review. Collection was reported for January–June 2023, before the PDPL came into force on 14 September 2023 [31].

Table 2. Reported knowledge and attitude items (N=1,276)

3.3 Attitudes Toward Genetic Data Sharing

The manuscript reports mean trust ratings of 3.8 (SD 1.0) for healthcare institutions and 2.6 (SD 1.1) for commercial DTC companies; 52% reported research benefit and 61% concern about discrimination. It reports a gender difference in privacy concern (p=0.046); effect size, instrument wording, missingness and multiple testing require clarification.

Table 3. Attitude Items (5-Point Scale)

3.4 Practices: DTC Testing Experience

The manuscript reports that 357 respondents (28%) used DTC testing. It reports 40% dissatisfaction with privacy information, while Table 4 describes 40% as having privacy concerns. Confirm the underlying item wording, denominators and whether these are distinct measures.

Table 4. Reported DTC genetic testing practices (n=357)

3.5 Willingness to Share Genetic Data

The manuscript reports 42% willing, 28% unwilling and 30% unsure about sharing genetic data with a research institution. It reports associations of education, PDPL awareness and trust with willingness. Cross-sectional associations do not establish causal effects.

Table 5. Reported logistic regression of willingness to share genetic data

3.6 Subgroup and Sensitivity Analyses

The manuscript reports subgroup and sensitivity analyses. Its statement that 54 partial responses were excluded is not reconciled with the 224 incomplete surveys excluded under Methods; the sample flow and exact analyses must be provided.

The manuscript reports an association of prior DTC use with willingness that was attenuated after adjustment. Model specifications, outcomes, sample sizes and uncertainty must be checked against original output; these associations do not establish a causal pathway.

4. Discussion

The reported survey explores privacy awareness and data-sharing attitudes, but the sampling frame, instrument and underlying data must be verified. Associations with education are descriptive and do not establish the effect of education or policy information.

4.1 Knowledge Deficits and Policy Awareness

Approximately 24% were reported to identify PDPL relevance to genetic data. The survey dates precede its entry into force on 14 September 2023 [31]; the exact questions, legal version and answer key need verification. Education initiatives could be evaluated prospectively rather than assumed effective.

4.2 Trust in Healthcare vs. Commercial Entities

Reported trust was higher for healthcare institutions than commercial DTC providers. Questionnaire wording, sample selection and uncertainty require examination before generalizing these results.

4.3 Gender and Cultural Considerations

The manuscript reports a gender difference in privacy concern. Its size, precision, multiple testing and item wording require verification; the available data cannot establish a cultural explanation.

4.4 Limitations

The reported online sampling may exclude people without internet access or adequate Arabic literacy. Unverified registry coverage, nonresponse, selection and missing-data handling limit generalizability. Cross-sectional associations do not establish temporal ordering or causation.

4.5 Recommendations

• Public education about genetic data protection may be considered, but any intervention should be evaluated for accuracy, accessibility and effectiveness.

• Access to qualified genetic counselling and interpretation may be considered in accordance with applicable clinical guidance.

• The need for and design of regulatory measures should be assessed by relevant authorities against applicable law and evidence.

• Privacy and genetic counselling approaches should be developed with community involvement and avoid unsupported cultural generalizations.

5. Conclusions

The manuscript reports survey responses on genetic privacy and data sharing. Study identity, sampling, instrument, ethics and analysis require verification, and the findings do not establish population-wide prevalence or causal effects.

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