A Scoping Review: Do instruments measuring genomic competence in nursing incorporate ethics?

Abstract Aim To explore the instruments used in measuring genomic competence in nursing. The objective was to understand how ethical issues are reflected in the instruments. Design A scoping review. Methods A systematically conducted scoping review was conducted by using CINAHL Complete and Medline databases covering the years from January 2010 to January 2022. Two authors inspected potentially eligible papers and assessed their quality independently using the critical appraisal tools of Joanna Briggs Institute. Twenty‐five articles were eligible including 19 different instruments. Included articles answered the research question: “How ethical issues are reflected in instruments measuring genomic competence in nursing?” The inductive thematic analysis was used in this review. Results Descriptions of ethical themes were unstructured in the scoped articles and instruments. Not all genomic competence instruments covered ethical aspects. Only three studies asked direct questions by using the word ethics or its derivates, including confidentiality in solving ethical problems, familiarity with the ethical aspects of genetic counselling and ability to identify ethical issues. Thirteen articles included ethics‐related themes encompassing knowledge, skills, concerns, advantages and disadvantages.


| BACKG ROU N D
The first guidelines for genomics competences and related suggestions for curricula for nurses were published back in the early 2000s in Europe and the United States (Consensus Panel, 2009;Kirk et al., 2003;Skirton et al., 2010). Nevertheless, the competences have not yet been fully integrated into nursing education (Camak, 2016;Kirk et al., 2011), which also means that genomics has not yet been fully integrated in nursing practice. Studies conducted in the 2010s have found that levels of genomic literacy and genomic competence in nursing are low (Calzone et al., 2012;Godino et al., 2013a;Skirton et al., 2012;Wright et al., 2019). Thompson and Brooks (2011) found that only a small share of nurses is confident in counselling clients or referring them to specialized services based on genomic data obtained from direct-to-consumer tests. The most recent literature shows that the gaps in integrating the genomics in nursing still remains (Calzone, Kirk, et al., 2018a;Camak, 2016;Dumo et al., 2020).
Knowledge in genomics, that is, genomic literacy, can be defined as an understanding of what the genome is and how genomic science works. This means understanding of its benefits and limitations and potential applications in health care, and the effects of genomics on society level (Ha et al., 2018;Hurle et al., 2013). Literacy can also be amplified as knowledge that includes both genomic health literacy and genomic science literacy (Hurle et al., 2013). This makes literacy a precursor to competence (Calzone, Kirk, et al., 2018b).
Competence connects knowledge and applications, or knowledge and skills, into a measurable or observable entity. (Consensus Panel, 2009;Skirton et al., 2012).
Ethics can be considered a relevant part of genomic competence in at least three ways. First, the theory-practice gap is linked with ethics in a way that Mortell (2018) calls it the theory-practiceethics gap. The theory-practice gap creates ethical dilemmas, and therefore, ethics should be considered as one component of it.
As the gap may constitute a barrier for combining knowledge and skills into competence, the implementation of genomic theory into clinical practice must include ethical consideration. Nurses need to understand the competences required for practice including knowledge of ethical, legal and social issues related to genomics (Rogers et al., 2017). This enables closing the gap.
Second, ethics plays a major role in the core competences of nursing. The ethical principles of nursing include autonomy, beneficence, nonmaleficence, veracity, justice and fidelity (Cannon & Delahoyde, 2020). The internal and external factors changing the nursing profession also create constant changes in ethics (Kangasniemi et al., 2015). Changes in science and technology also create new dimensions to ethics (Cipriano, 2015). Therefore, as genomics is changing health care, ethics in health care is also changing.
Third reason is genomics itself. The genomic-related ethical questions are already part of current practice in health care (Murakami et al., 2020). Genomics has raised new and complex ethical issues for which basic ethical concepts do not provide an answer (Huddleston, 2014;Steck, 2018). Steck (2018) (Houwink et al., 2011). The security and confidentiality of information, health equality and the effects of genomic information on an individual have also been highlighted. Genomic data are not only about the individual but also involves considering what the information may mean to relatives, whether they have the right to receive or refuse this information, and whether there are resources in the healthcare system for meeting families or clients to discuss their newly discovered needs (Lea, 2008). Increasing knowledge of the moral and ethical implications of genomics is essential in nursing (Seven et al., 2017). In their study, Seven et al. (2017) found that 94% of nurses are still unaware of ethical regulations or a lack thereof.
Although genetic research offers undeniable benefits to consumers and the general public, in-depth discussion is needed due to the nature of genetic information. For example, issues concerning predictive tests, interpretation of test results and how these are offered to the public raise ethical questions (Suchetana, 2021) that nurses encounter at the front line of health care. In addition, the published recommendations for genomic competences for nurses include ethics as part of identifying ethical, ethnic, cultural, religious, legal, fiscal and social issues related to genomics (Consensus Panel, 2009;Greco & Salveson, 2009).
Competences include the minimal standards for providing safe, accountable and responsible health care within a medical specialty (Calzone et al., 2012). Genomic competences require extensive skill management, which makes it difficult to integrate genomic competences, considered complex, into nursing practice  According to Wright (2015), technical, interpersonal and critical thinking are domains of skills necessary in nursing. Competence assessments should also address these skills. Therefore, there is a need to study how genomic competence is assessed in nursing. Despite many previous studies, it is unclear what kind of competence the used survey instruments measure and whether the instruments cover all components of genomic competence. Anderson et al. (2015) studied psychometrically robust survey instruments of genomic competence in their systematic review, and Skirton et al. (2012) and Wright et al. (2018) focused on competence levels in their reviews. For these reasons, this scoping review aims to identify and chart the available evidence of the content of the instruments from a new angle: the ethical competence in genomicinformed nursing. Skirton et al. (2012) demonstrated that only a few studies, 3 out of 11, mentioned ethical aspects: discrimination of ethnic groups, ethical concerns due to the personal religious beliefs of health personnel, and a lack of an ethical protocol.
According to Munn et al. (2018), the scoping reviews reveal how studies are conducted by describing and analysing gaps in a certain area of literature. This scoping review aims to clarify the key concept of ethical competence in genomics, identify related key characteristics and describe how the key concept is understood. The research question is: How ethical issues are reflected in instruments measuring genomic competence in nursing?

| Design
The study design was a scoping review. The authors followed the Preferred Reporting Items for Systematic Reviews and Meta-Analyses extension for Scoping Reviews (PRISMA-ScR) statement in reporting the utilized methodology, analyses and results (Sarkis-Onofre et al., 2021;Tricco et al., 2018).

| Methods
Two databases for nursing and allied health sciences, CINAHL Complete and Medline, were chosen. The search strategy was tailored with the help of a university's information specialist. After defining and checking the subject headings with MeSH (Medline) and Subject Headings (CINAHL), and after test runs, it was decided to use keyword search. The keyword search was chosen because the subject search yielded a narrower result, and usable and eligible studies were eliminated in trial searches. The search phrases are visible in Table 1.
Eligibility criteria were discussed and decided among the authors. Research articles focused on the genomic competence of nursing staff were considered the most important. Articles that included nurses as informants among other health professionals were accepted. Both genetic and genomic competence studies were accepted to the review. Research articles on the impact of education were included if the authors had performed a pre-test on the participants before an education intervention. The pre-tests demonstrated the basic level of the genomic competence of qualified nurses. Articles related to undergraduate nursing students were not accepted as working nurses were considered to have more experience with the ethical dimensions of genomic knowledge in patient encounters than nursing students.
As this review emphasized general and comprehensive competence in genomics and genetics (G/G), the articles focused on competence of a specific disease or pharmacogenetics were excluded. Peer-review articles were included if they were published in English in the period 2010-2022. Qualitative, quantitative, and mixed-method studies were included. With this acceptance of different research methods, the authors strive to achieve an in-depth understanding of key concepts and to find out the accuracy of the instruments to measure broad and complex competence in genomics. Inclusion and exclusion criteria are presented in Table 2. The questions or themes of the instruments were clearly described in 16 articles. In addition to this, nine authors were contacted and asked if it was possible to see the original instruments for the analysis of this scoping review to clarify the themes found in the articles. Four out of nine authors sent the additional sources. Five articles whose authors did not send the full instruments were further processed separately and found to contain sufficient information about the content of instruments to perform an analysis. Hence, they were included in the review. In total, 25 articles were selected for inclusion in the analysis. To increase consistency, the two authors evaluated the title, abstract and full text fully independently. The authors negotiated the search results together and selected the eligible articles. All included articles were saved to RefWorks to make them available for both authors. The included articles are presented in Table 3.

Advanced search in CINAHL and
Although the main interest of this scoping review was not the findings of the studies, but rather the content concerning ethical is- The scores of the appraisal differed between the two authors in 17 articles. The differences mostly concerned the objective, standard criteria used for the measurement of the condition, or the strategies used to deal with stated confounding factors. If there was only a one-point difference, the authors selected the lower score. If there was a larger gap in the scores, the authors explored the study again, deliberated and reached a conclusion for the quality assessment.
The results of the quality appraisal are presented in Table 3.

| Analysis
After sources had been selected for inclusion, data were extracted from each article. Two data extraction sheets were developed for collecting information. The articles were examined from the perspective of the research question, and discovered themes were extracted and categorized. The first formatted sheet included authors, year of publication, journal, the title of article, objectives, study type and setting, participants, availability of the instrument, results and quality appraisal. This data sheet is seen in Table 3. Another sheet was utilized in the writing process to gather information including the concepts, instrument details, measurement details, field of genomics / genetics and the content of the competence instruments. The synthesis process was started by piloting the forms with three articles (Pollock et al., 2021).
The thematic analysis method used in the review was inductive with the focus on ethics. Both a semantic and latent approach were used to make all relevant data extracts related to ethics in genomics visible (Vaismoradi et al., 2013). This enabled the authors to visualize main content and underlying assumptions concerning the data. In the synthesis process, the concepts and themes found in the instruments or articles were discussed to form a joint understanding of them. The identified themes of ethical competence in genomics in nursing are described in the results.

| Ethics
Research Ethics Committee approval was not required in scoping review.

One instrument, The Genetics and Genomics in Nursing Practice
Survey (GGNPS), was utilized in six articles (Calzone et al., 2012(Calzone et al., , 2013

TA B L E 3 Selected articles.
Author
The instruments in the articles were developed based on literature reviews, the authors' expertise, collaboration with specialists, previous instruments or previously published competence guidelines by global and national nurses' associations, and education organizations such as the International Society of Nurses in Genetics,

Consensus Panel, American Nurses Association and the National
Coalition for Health Professional Education in Genetics.
Competence instruments included the assessment of knowledge, skills, attitudes, confidence, beliefs, perceptions or concerns.
They measured actual or self-reported competence. An actual competence section was found in 19 articles, while ten articles included also self-estimated competence. Five articles included only self-evaluation of competence. Santelli (2016) article did not report this information. The majority of the studies were quantitative, only Wright et al. (2020) study was constructed for qualitative methods with semi-structured questions.

| Ethical competence as an unstructured phenomenon in genomics
Ethics was the primary focus in this review. The description of ethics was unstructured and scattered in the articles. The articles or instruments included visible or hidden ethics.
In seven articles, six different instruments did not include any visible or hidden ethical questions (Gharaibeh et al., 2010;Godino et al., 2013b;McCabe et al., 2016;Melo et al., 2015;Seven et al., 2015;Whitt et al., 2016;Wright et al., 2019). These instruments were fully available for analysis. In addition, three instruments which were not fully available did not cover topics of ethics either (Murakami et al., 2020;Santelli, 2016;Wright et al., 2020).
The themes of ethics were addressed as skills, concerns, advantages and disadvantages in the instrument questions of hidden ethics. The skills included nurses' ability to define clients' autonomy, informed decision-making, voluntary action (Newcomb et al., 2019) and in a case description by Melo et al. (2015), as a nurses' ability to act ethically. Ethical themes in the professionals' concerns included costs, stigmatization, privacy, confidentiality, insurance, employment discrimination (Almomani et al., 2020) and the discrimination of ethnic minorities (Saligan & Rivera, 2014). Workplace discrimination was also addressed in Wallen et al.'s (2011) study.

| Ethics as part of an extensive competence
Overall, ethics was discussed illogically. Ethics was described as part of competence, but it was not necessarily assessed with the instrument. It was typical to the instruments that ethical competence was measured as part of a large set of other issues related to genomics. This set included ethical, legal, social (Melo et al., 2015;Williams & Dale, 2015), religious, cultural and ethnic issues (Newcomb et al., 2019). It was also common to use a question type that condensed several ethical principles and skills into a single competence and did not separate the parts into distinct functions: "I define issues that undermine the rights of my clients for autonomous, informed genetic-and genomic-related decision making and voluntary action." (Newcomb et al., 2019).
The verbs to resolve, know, argue, provide, define and identify were used to describe practice-related skills in ethical competence in instruments. When a thematic analysis allows interpretation (Vaismoradi et al., 2013), ethical principles can be found in the categories of visible and hidden ethics. The identified ethical principles included justice, privacy, respect for autonomy, patient rights for optimal care, beneficence, effectiveness and nonmaleficence. The iceberg-shaped illustration of ethics in the instruments is presented in Figure 2. This review contributes to nursing science and nursing education by increasing understanding of how comprehensive genomic competence is. Ethics, as part of genomic competence, should be taught and researched in more detail. The role of nurses will be emphasized in the future as genomic information and knowledge of patients increase further.

| Limitations
The use of only two databases for the literature search may be considered as a limitation for this review. However, the search was made with an information specialist of health sciences and search phrases were formulated after comprehensive consideration and pilot searches. The pilot searches illustrated that the chosen databases were extensive, and they systematically and worldwide yielded information about the instruments used for assessing genomic competence in nursing. Used databases covered the research area of nursing competence and genomics in nursing.
The well-considered decision about choosing these databases was based on the following evidence. Subirana et al. (2005) stated that for a search for a systematic review on nursing topics, CINAHL and MEDLINE are essential databases for accuracy of the search.
CINAHL is considered the world's largest source of full-text nursing and allied health journals, and it is an essential database to clinical practice and research in nursing. (Ebsco, n.d.;Hopia & Heikkilä, 2020;McGill Library, n.d.). Medline database is also widely recognized as an important source for biomedical literature (Tampere University Library, n.d.).
Due to limited access to full instruments in some articles, assessing each question in detail was not possible. However, the content of the questions was available. In addition, all articles included described the competence questions sufficiently extensively even if the full instruments were not available in additional sources or the authors did not provide their original instruments for the purposes of this review.

| Conclusion
Ethical aspects are recommended to be included in education and clinical practice of nursing. In addition, it is stated to be part of genomics. Thus, competence instruments should also systematically include ethics to measure this area of genomics. Current competence instruments measure ethics only as part of a large entity together with other issues such as legal, social, cultural and ethnic issues. It is important to refine ethical aspects of genomic competence in nursing practice and to measure perceptions, skills, justifications and concerns related to ethical competence in genomics with further developed instruments.

ACK N O WLE D G E M ENTS
We thank all the authors who sent previous instruments for the analyses of this scoping review.

FU N D I N G I N FO R M ATI O N
This research received no specific grant from any funding agency in the public, commercial or not-for-profit sectors.

CO N FLI C T O F I NTE R E S T S TATE M E NT
No conflict of interest has been declared by the authors.

DATA AVA I L A B I L I T Y S TAT E M E N T
The data that support the findings of this study are available on request from the corresponding author. The data are not publicly available due to privacy restrictions. Part of the instruments analyzed were available only for this review.