scholarly journals Research participants’ experiences with return of genetic research results and preferences for web‐based alternatives

2019 ◽  
Vol 7 (9) ◽  
Author(s):  
Jill B. Gaieski ◽  
Linda Patrick‐Miller ◽  
Brian L. Egleston ◽  
Kara N. Maxwell ◽  
Sarah Walser ◽  
...  
Keyword(s):  
Genetic Research ◽  
Web Based ◽  
Research Results ◽  
Research Participants

The Return of Results of Deceased Research Participants

2011 ◽  
Vol 39 (4) ◽  
pp. 621-630 ◽  
Author(s):  
Anne Marie Tassé
Keyword(s):  
Population Studies ◽  
Genetic Research ◽  
Family Members ◽  
Research Participant ◽  
Return Of Results ◽  
Research Results ◽  
Research Participants ◽  
Related Family ◽  
Ethical And Legal Issues

Until the mid-20th century, biomedical research centered on the study of specific diseases, concerned with short periods of time and small groups of living research participants. However, the growth of longitudinal population studies and long-term biobanking now forces the research community to examine the possibility of the death of their research participants.The death of a research participant raises numerous ethical and legal issues, including the return of deceased individuals’ research results to related family members. As with the return of individual research results for living research participants, the question of the obligation to return a deceased person’s research results to family members has yet to be settled. This question is particularly acute in the context of genetic research since the research results from one individual may have health implications for all biological relatives.

Interest in and outcomes with web-based education for return of genetic research results for inherited susceptibility to breast cancer.

2018 ◽  
Vol 36 (15_suppl) ◽  
pp. 1531-1531
Author(s):  
Angela R. Bradbury ◽  
Jill B Gaieski ◽  
Brian L. Egleston ◽  
Linda J. Patrick-Miller ◽  
Wendy Chung ◽  
...  
Keyword(s):  
Breast Cancer ◽  
Genetic Research ◽  
Web Based ◽  
Research Results ◽  
Inherited Susceptibility ◽  
Web Based Education

scholarly journals Solutions for Unexpected Challenges Encountered when Integrating Research Genomics Results into the EHR

ACI Open ◽  
2020 ◽  
Vol 04 (02) ◽  
pp. e132-e135
Author(s):  
Luke V. Rasmussen ◽  
Christin Hoell ◽  
Maureen E. Smith ◽  
Rex Chisholm ◽  
Justin Starren ◽  
...  
Keyword(s):  
Genetic Research ◽  
Lessons Learned ◽  
Return Of Results ◽  
Patient Portal ◽  
Test Results ◽  
Research Results ◽  
Genetic Test Results ◽  
Future Return ◽  
New Research ◽  
Genetic Results

Abstract Background While there have been published reports detailing technical challenges of incorporating genetic test results into the electronic health record (EHR) with proposed solutions, less has been published about unanticipated sociotechnological or practical communication challenges involved in this process. Objectives This study was aimed to describe unanticipated issues that arose returning genetic research results through the EHR as part of the National Human Genome Research Institute (NHGRI)-funded electronic Medical Records and Genomics (eMERGE) 3 consortium, and provide lessons learned for future implementations Methods We sequenced 3,000 participants on a 109-gene panel and returned genetic results initially in person and/or by letter, with a later release directly into the EHR and patient portal. Results When results were returned through the EHR, multiple participants expressed confusion and contacted the health system, resulting in our institution temporarily freezing our return of research results. Discussion We determined the likely causes of this issue to be (1) the delay between enrollment and results return, (2) inability to personalize mass e-mail messages announcing new research test results in the EHR, (3) limited space for description of test results in the EHR, and (4) the requirement to list an ordering physician for research results in the EHR. For future return of results, we propose sending preparatory e-mails to participants, including screenshots of how they can expect to see their results presented in the EHR portal. Conclusion We hope our lessons learned can provide helpful guidance to other sites implementing research genetic results into the EHR and can encourage EHR developers to incorporate greater flexibility in the future.

scholarly journals Automatic Placement of Genomic Research Results in Medical Records: Do Researchers Have a Duty? Should Participants Have a Choice?

2015 ◽  
Vol 43 (4) ◽  
pp. 827-842
Author(s):  
Anya E.R. Prince ◽  
John M. Conley ◽  
Arlene M. Davis ◽  
Gabriel Lázaro-Muñoz ◽  
R. Jean Cadigan
Keyword(s):  
Medical Record ◽  
Medical Records ◽  
Genomic Research ◽  
Research Results ◽  
Research Participants ◽  
Difficult Question ◽  
Automatic Placement ◽  
Study Participants ◽  
Research Studies

The growing practice of returning individual results to research participants has revealed a variety of interpretations of the multiple and sometimes conflicting duties that researchers may owe to participants. One particularly difficult question is the nature and extent of a researcher’s duty to facilitate a participant’s follow-up clinical care by placing research results in the participant’s medical record. The question is especially difficult in the context of genomic research. Some recent genomic research studies — enrolling patients as participants — boldly address the question with protocols dictating that researchers place research results directly into study participants’ existing medical records, without participant consent. Such privileging of researcher judgment over participant choice may be motivated by a desire to discharge a duty that researchers perceive themselves as owing to participants. However, the underlying ethical, professional, legal, and regulatory duties that would compel or justify this action have not been fully explored.

Urgensi Autentikasi dan Legalisasi Arsip Pertanahan Hasil Digitalisasi

Tunas Agraria ◽  
2020 ◽  
Vol 3 (3) ◽  
Author(s):  
Farista Dewi Anindyati ◽  
Abdul Haris Farid ◽  
Dwi Wulan Titik Andari
Keyword(s):  
Qualitative Method ◽  
Application System ◽  
Web Based ◽  
Research Results ◽  
Descriptive Approach ◽  
Original File ◽  
Land Records

Land archive is the living archive of that must be fully maintained. As things goes, Sleman Land Office does digitalization archives to Gambar Ukur, Surat Ukur, Buku Tanah and Warkah by using a web-based application system which is called the Laris application. The research is aimed at finding out the reason why the office is doing digitalization with Laris application and finding out wheter this digitalized archive has been able to replace the original file in the form of paper. This research was conducted with a qualitative method with a descriptive approach Based on research results, obtained information that the digitalization of land records carried out in the Sleman’s Land office which has been done since year 2014 not solely done to change the format of analog files to digital files, but is expected to able provide more comprehensive benefits related to the acceleration of land services so that in practice it uses the Laris application.  However, the existence of this digitalized archive still not able to replace the position of analog archive in manner so that the analog archive is still maintained. Therefore, its important to authentication and legalization so the archive of digitalization result legally strong.

scholarly journals “Stop Talking to People; Talk with Them”: A Qualitative Study of Information Needs and Experiences Among Genetic Research Participants in Pakistan and Denmark

2018 ◽  
Vol 14 (1) ◽  
pp. 3-14 ◽  
Author(s):  
Zainab Afshan Sheikh ◽  
Klaus Hoeyer
Keyword(s):  
Qualitative Study ◽  
Information Exchange ◽  
Information Needs ◽  
Research Collaboration ◽  
Genetic Research ◽  
Research Participation ◽  
Research Participants ◽  
Mutual Engagement ◽  
Information Practices ◽  
Types Of Information

This article explores how research participants experienced information practices in an international genetic research collaboration involving the collection of biomaterial and clinical data in both Pakistan and Denmark. We investigated how people make sense of their research participation and the types of information they need and desire. We found great variation in what information exchange does and what participants experience as meaningful. For example, information practices could serve as a source of respect and recognition (in Denmark) or of hope, understanding or help when dealing with suffering (in Pakistan). Policies aimed at harmonizing ethics standards for international research do not encapsulate some of the most important aspects of information practices for the research participants involved. We suggest shifting the focus from standards of one-way information delivery to a more process-oriented form of research ethics, where the contextual exploration of local needs through a mutual engagement with participants gains more ground.

scholarly journals ANALISIS USER EXPERIENCE WEB BASED DIGITAL LIBRARY JURUSAN PENDIDIKAN TEKNIK INFORMATIKA UNIVERSITAS PENDIDIKAN GANESHA

2017 ◽  
Vol 6 (2) ◽  
pp. 320
Author(s):  
I Made Agus Oka Wijaya . ◽  
I Ketut Resika Arthana, S.T., M.Kom . ◽  
Gede Aditra Pradnyana, S.Kom., M.Kom .
Keyword(s):  
College Students ◽  
User Experience ◽  
Digital Library ◽  
Descriptive Analysis ◽  
Problem Analysis ◽  
Heuristic Evaluation ◽  
Web Based ◽  
Population Research ◽  
Research Results ◽  
The Web

Penelitian ini bertujuan untuk menganalisis tingkat user experience pada web based digital library Jurusan Pendidikan Teknik Informatika Universitas Pendidikan Ganesha yang diukur menggunakan metode heuristic evaluation dengan menggunakan 10 Variabel. Tahapan penelitian dimulai dari analisis masalah yaitu penyebaran kuisioner secara online maupun offline. Hasil survey berupa kuisioner yang peneliti sebarkan ke mahasiswa Pendidikan Teknik Informatika Populasi penelitian ini adalah mahasiswa pendidikan teknik informatika angkatan 2013 dan mahasiswa pendidikan teknik informatika angkatan 2014. Sampel dalam penelitian ini terdiri dari 60 orang mahasiswa, Teknik analisis data yang digunakan analisis deskriptif dengan persentase kemudian dideskripsikan untuk mengukur tingkat usability pada website digilib. Hasil penelitian menunjukkan tingkat user experience pada web based digital library pada responden mahasiswa 47% yang masuk dalam kategori sedang. Dari hasil analisa kuisioner didapat hasil bahwa tampilan (layout) dari website digilib PTI sudah mampu memenuhi kriteria usability sebuah website. Sehingga dalam penelitian ini rekomendasi berdasarkan hasil kuisioner yang memiliki persentase rendah. Saran dari hasil kuisioner antara lain, perlu adanya tambahan menu login untuk mahasiswa agar mempermudah mahasiswa dalam mengakses web digilib, informasi pada website sebaiknya disajikan secara lengkap dan terbaru, design pada web digilib PTI sebaiknya ditingkatkan kembali karena masih kurang interaktif dan masih monoton, perlu adanya perbaikan pada halaman detail mahasiswa karena informasi yang disediakan masih terjadi kesalahan, perlu adanya menu bantuan untuk mempermudah pengguna dalam mencari informasi pada web digilib. Kata Kunci : analisa, usability, heuristic evaluation, Web Digilib This study attempts to analyzed levels of user experience in the web based digital library of Jurusan Pendidikan Teknik Informatika Universitas Pendidikan Ganesha measured in a heuristic evaluation by using 10 variables .Stage of the research commenced of the problem analysis that is spreading survey online or offline .The survey who researchers spread to students Pendidikan Teknik Informatika Population research this is a student Pendidikan Teknik Informatika 2013 generation and college students Pendidikan Teknik Informatika 2014 generation .Sample in this research are 60 students , technique analysis the data used descriptive analysis with the then described for measuring the degree of usability at the website digilib . The research results show the user experience in the web based digital library among respondents students 47 % in medium category with the design. From the analysis shows that survey obtained display ( layout ) website digilib PTI are able to meet the criteria usability of a website. So in this study recommendations based on the survey that having low percentage. Advice from survey among others, need to the additional menu logins for students to simplify students in access web digilib, information on the website should be presented a complete and latest, design to the web digilib PTI should be increased back as weak and still monotonous interactive, need of an improvement on page detail students because information provided still error occurred, it needs the help menu to ease users in seeking information to the web digilib keyword : analyze, usability, heuristic evaluation, Web Digilib

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