Attitudes towards Personal Genomics and Sharing of Genetic Data among Older Swiss Adults: A Qualitative Study

2017 ◽  
Vol 20 (5) ◽  
pp. 293-306 ◽  
Author(s):  
Laura  Mählmann ◽  
Sebastian Schee gen. Halfmann ◽  
Agnes von Wyl ◽  
Angela Brand
Keyword(s):  
Qualitative Study ◽  
Genetic Data ◽  
Personal Genomics

scholarly journals Exploring Genetic Data Across Individuals Using Novel Comparative Report Tools (Preprint)

2018 ◽  
Author(s):  
Lauren Westendorf ◽  
Orit Shaer ◽  
Christina Pollalis ◽  
Clarissa Verish ◽  
Oded Nov ◽  
...  
Keyword(s):  
Family Members ◽  
Genomic Data ◽  
Genetic Data ◽  
Personal Genomics ◽  
Genomic Information ◽  
Genetic Characteristics ◽  
Personal Genomic ◽  
The Third ◽  
User Comprehension ◽  
Compare And Contrast

BACKGROUND The growth in the availability of personal genomic data to non-experts poses multiple challenges to Human-Computer Interaction (HCI) research: data are highly sensitive, complex, and have health implications for individuals and families. However, there has been little research on how non-expert users explore genomic data. Studies that investigated the information practices of personal genomic data users found that non-experts seek to contextualize and compare their personal data to others. The family-relevant nature of genetic data highlights the need for tools to enable non-experts to explore not only their own data, but to compare and contrast it with the data of others. OBJECTIVE We designed CrossGenomics, a novel tool for comparing personal genetic reports, which enables exploration of shared and unshared genetic variants among individuals. Focusing on communicating comparative impact, rarity, and certainty, we evaluated alternative novel interactive prototypes of this tool. In particular, we sought to: 1. asses to what extent are users able to comprehend both intra-individual and inter-individual information, and whether there are gaps between subjective and objective comprehension; 2. understand how people engage with a comparison tool for personal genomics, and what visualization type and features are most helpful for comprehension; 3. identify the needs of early adopters, people who share their genetic reports publicly, for comparing their genetic reports to others’. METHODS We conducted three online user studies. The first two studies employed a controlled experimental design to examine the effectiveness of different design interventions on user comprehension. In both studies, we applied between-subjects design with alternative views for comparing the personal genomic information of fictional family members. Participants were Amazon Mechanical Turk workers. Building on the two initial studies, the third user study evaluated a redesigned version of CrossGenomics 2.0, which combines multiple views. We recruited 49 participants, who are members of Open Humans and shared their genomic information publicly. Participants used the tool to compare their own personal genomic report to the report of four famous people. RESULTS Results from the first two studies highlight strengths of two visualization types and of particular features in enabling user comprehension of genomic data, and demonstrate the value of affording users the flexibility to examine the same report using multiple perspectives. Results from the third study emphasize users’ motivation and needs in comparison of genomic data. CONCLUSIONS The familial nature of personal genomic data highlights the need for tools to enable non-experts to explore not only their own data, but to compare and contrast their data with data of other biological family members, who share common genetic characteristics. The design and evaluation of CrossGenomics offer important insights into the design of future tools for personal genomics exploration and comparison.

In Search of the Origin of the Merchants of Sena

2003 ◽  
Vol 10 (1) ◽  
pp. 24-50 ◽  
Author(s):  
Magdel Le Roux
Keyword(s):  
Qualitative Study ◽  
Southern Africa ◽  
Oral Tradition ◽  
East Coast ◽  
Early Stage ◽  
Genetic Data ◽  
The Other ◽  
Oral Traditions ◽  
The North ◽  
Bear Witness

AbstractThe oldest, recorded oral tradition ofthe Lemba of southern Africa, individually also known as mušavi (buyer/trader), nyakuwana (the man who finds the things which are bought), or mulungu ('white man' or 'the man from the North'), is that their Israelite ancestors came to Africa by boat as traders from a remote place called Sena on the 'other side' of the 'Phusela'. Some say they came through Egypt. From anthropological and archaeological evidence it has become clear that at a very early stage continuing influences between the Semitic world (Phoenician, Hebrew and Sabaean) and the eastern parts of Africa had a reciprocal impact. The Sabaean (Yemenite) colonies were established in Ethiopia very early. There seems to be a historical link between the Lemba and Yemen. Later documents (684-900 CE) (for example Arab and Portuguese) refer to 'Moorish' traders along the east coast of Africa who possessed notably Semitic characteristics without being clearly Muslim. It is not certain who those 'Moorish' people were, but their traditions and customs were reminiscent of those that we know today as Lemba. Numerous Lemba songs, recitations, prayers, praises, proverbs and customs bear witness to their traditions of origin and their trading skills. One advantage of dealing with a 'living source' is that the researcher can sometimes verify some of the information on traditions. A qualitative study of Lemba 'Israelite' culture underlies this article. Oral traditions do not provide us with chronology, and some cannot be verified. The oral traditions of the Lemba and historical, archaeological and genetic data suggest that the immigration of the Lemba to Africa as traders could have taken place before the Christian era, but probably before the 6th century CE. An oral tradition can survive many generations.

Qualitative study on “hydropic degeneration” of The hepatocytes in viral hepatitis

1990 ◽  
Vol 48 (3) ◽  
pp. 568-569
Author(s):  
Le Meizhao ◽  
Ye Ming ◽  
Song Xiaoming ◽  
Xu Jiazhang
Keyword(s):  
Qualitative Study ◽  
Viral Hepatitis ◽  
Chronic Active Hepatitis ◽  
Microscopic Observation ◽  
Hydropic Degeneration ◽  
Light Microscopic Observation ◽  
Biopsy Specimens ◽  
Endoplasm Reticulum ◽  
Mixed Fluid ◽  
Peripheral Cytoplasm

“Hydropic degeneration” of the hepatocytes are often found in biopsy of the liver of some kinds of viral hepatitis. Light microscopic observation, compareted with the normal hepatocytes, they are enlarged, sometimes to a marked degree when the term “balloning” degeneration is used. Their cytoplasm rarefied, and show some clearness in the peripheral cytoplasm, so, it causes a hydropic appearance, the cytoplasm around the nuclei is granulated. Up to the present, many studies belive that main ultrastructural chenges of hydropic degeneration of the hepatocytes are results of the RER cristae dilatation with degranulation and disappearance of glycogen granules.The specimens of this study are fixed with the mixed fluid of the osmium acidpotassium of ferricyanide, Epon-812 embed. We have observed 21 cases of biopsy specimens with chronic severe hepatitis and severe chronic active hepatitis, and found that the clear fields in the cytoplasm actually are a accumulating place of massive glycogen. The granules around the nuclei are converging mitochondria, endoplasm reticulum and other organelles.

American Speech-Language Pathologists' Training and Legislative Knowledge When Working With Immigrant and Refugee Populations: A Qualitative Study

2019 ◽  
Vol 4 (5) ◽  
pp. 1148-1161
Author(s):  
Camilo Maldonado ◽  
Alejandro Ashe ◽  
Kerri Bubar ◽  
Jessica Chapman
Keyword(s):  
Qualitative Study ◽  
Service Provision ◽  
Limited English Proficiency ◽  
Linguistic Diversity ◽  
Speech Language Pathologists ◽  
Federal Mandates ◽  
Refugee Families ◽  
Provision Of Services ◽  
English Speaking ◽  
Immigrant And Refugee

Background American educational legislation suggests culturally competent speech and language services should be provided in a child's native language, but the number of multilingual speech-language pathologists (SLPs) is negligible. Consequently, many monolingual English-speaking practitioners are being tasked with providing services to these populations. This requires that SLPs are educated about cultural and linguistic diversity as well as the legislation that concerns service provision to non-English or limited English proficiency speakers. Purpose This qualitative study explored the experiences of monolingual, American, English-speaking SLPs and clinical fellows who have worked with immigrant and refugee families within a preschool context. It investigated what training SLPs received to serve this population and what knowledge these SLPs possessed with regard to federal legislation governing the provision of services to culturally and linguistically diverse (CLD) communities. Method Ten American clinicians with experience treating CLD children of refugee and immigrant families in the context of preschool service provision participated in the study. Semistructured interviews were utilized to better understand the type of training clinicians received prior to and during their service delivery for CLD populations. Additionally, questions were asked to explore the degree to which practitioners understood federal mandates for ethical and effective service provision. The data collected from these interviews were coded and analyzed using the principles of grounded theory. Findings The results of this study revealed that there was a general sense of unpreparedness when working with CLD clients. This lack of training also attributed to a deficiency of knowledge surrounding legislation governing service provision to CLD populations.

Student Anticipations and Reactions to Hybrid Format Education

2008 ◽  
Vol 11 (2) ◽  
pp. 76-82 ◽  
Author(s):  
Sarah M. Ginsberg
Keyword(s):  
Qualitative Study ◽  
Learning Styles ◽  
Student Perceptions ◽  
Course Design ◽  
Learning Experience ◽  
Learning Experiences ◽  
Traditional Classroom ◽  
Traditional Learning ◽  
Online Platform ◽  
Hybrid Format

Abstract This qualitative study examined student perceptions regarding a hybrid classroom format in which part of their learning took place in a traditional classroom and part of their learning occurred in an online platform. Pre-course and post-course anonymous essays suggest that students may be open to learning in this context; however, they have specific concerns as well. Students raised issues regarding faculty communication patterns, learning styles, and the value of clear connections between online and traditional learning experiences. Student concerns and feedback need to be addressed through the course design and by the instructor in order for them to have a positive learning experience in a hybrid format course.

Bilingual and Monolingual Students' Perceptions of the CSD Major: A Qualitative Study

2015 ◽  
Vol 18 (1) ◽  
pp. 16-31 ◽  
Author(s):  
Flora Keshishian ◽  
Rebecca Wiseheart
Keyword(s):  
Qualitative Study ◽  
Undergraduate Students ◽  
Critical Role ◽  
School Setting ◽  
The United States ◽  
Bilingual Students ◽  
Speech Language Pathology ◽  
Diverse Environment ◽  
Language Pathology ◽  
Areas Of Interest

There is a growing demand for bilingual services in speech-language pathology and audiology. To meet this growing demand, and given their critical role in the recruitment of more bilingual professionals, higher education institutions need to know more about bilingual students' impression of Communication Sciences and Disorders (CSD) as a major. The purpose of this qualitative study was to investigate bilingual and monolingual undergraduate students' perceptions of the CSD major. One hundred and twenty-two students from a large university located in a highly multicultural metropolitan area responded to four open-ended questions aimed at discovering students' major areas of interest (and disinterest) as well as their motivations for pursuing a degree in CSD. Consistent with similar reports conducted outside the United States, students from this culturally diverse environment indicated choosing the major for altruistic reasons. A large percentage of participants were motivated by a desire to work with children, but not in a school setting. Although 42% of the participants were bilingual, few indicated an interest in taking an additional course in bilingual studies. Implications of these findings as well as practical suggestions for the recruitment of bilingual students are discussed.

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