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Record W4362575405 · doi:10.22215/etd/2023-15346

Privacy, Biological Relatives, and at-Home DNA Testing

2023· dissertation· en· W4362575405 on OpenAlexaff
Khadija Baig

Bibliographic record

Venuenot available
Typedissertation
Languageen
FieldMedicine
TopicEthics in Clinical Research
Canadian institutionsCarleton University
Fundersnot available
KeywordsInternet privacyTest (biology)PerceptionPsychologyPrivacy protectionInformation privacyDna testingFamily memberComputer scienceMedicineFamily medicineGeneticsBiology

Abstract

fetched live from OpenAlex

At-home DNA testing remains popular amongst individuals today.These direct-toconsumer services come with several privacy risks, that can extend far beyond the individuals taking the test.How do participants attribute risk to biological family members?How do users and non-users differ in comfort with their data being shared, and their understanding of privacy risks?How do privacy perceptions differ for ancestry and health data?To investigate these questions, we conducted a 2 × 2 survey, and discovered non-users were significantly more privacy conscious, and that health data was considered more beneficial overall.We then interviewed 10 biological family members of users who had not taken a test themselves; though many were unconcerned or indifferent towards privacy, privacy-conscious participants were frustrated by, and resigned to, the loss of control over their data.We discuss our findings, the implications of our research, offer recommendations to improve privacy, and identify areas for future research.This thesis is the result of support and guidance from many over the years.To my supervisor, Sonia Chiasson: I would never have found my love for research and HCI had I not stumbled across CHORUS as an undergraduate in 2015.You have my deepest gratitude, for the infinite patience, feedback, and guidance.You are a stellar mentor, and have always been there for your students (rain or shine).I feel privileged to have been mentored by you,

Fetched live from OpenAlex and de-inverted. Abstracts are not stored in this database: the inverted indexes are 8.6 GB of the frame’s 9.3 GB of text, and the host has 13 GB free.

How this classification was reachedexpand

Full frame machine prediction

Teacher imitation

Not calibrated prevalence, not ground truth. Human validation pending. The Gemma side is a direct model label for every work in the frame, read from the title-only record. The Codex side is a classifier learned from the 10,348 direct Codex labels and calibrated to design-weighted sample rates; fields without enough sample support carry no Codex call. Candidate is the union of the two sides; consensus is their intersection. These outputs are machine_predicted_unvalidated and are not human labels.

metaresearch head score (Codex)0.012
metaresearch head score (Gemma)0.034
Version: metacan-v3-hybrid-931329e0061cValidation status: machine_predicted_unvalidated
Candidate categoriesnone
Consensus categoriesnone
DomainCandidate signal: none · Consensus signal: none
Study designCandidate signal: Theoretical or conceptual · Consensus signal: none
GenreCandidate signal: Empirical · Consensus signal: Empirical
Teacher disagreement score0.012
Threshold uncertainty score0.064

Distilled classifier scores by category (both heads)

CategoryCodexGemma
Metaresearch0.0120.034
Meta-epidemiology (narrow)0.0000.000
Meta-epidemiology (broad)0.0000.000
Bibliometrics0.0000.001
Science and technology studies0.0040.008
Scholarly communication0.0040.003
Open science0.0000.003
Research integrity0.0010.002
Insufficient payload (model declined to judge)0.0040.000

Machine scores (provisional)

The two teacher heads of the student model, read on this work. A score orders the frame for review; it never asserts a category, and the validation status ships verbatim with every row.

Baseline scores from an immature model (maturity gate not passed, 7 training rounds). Scores rank; they never assert a category.

Opus teacher head0.695
GPT teacher head0.603
Teacher spread0.092 · how far apart the two teachers sit on this one work
Validation statusscore_only:v0-immature-baseline · verbatim from the scoring run: score_only means the number may rank works, and no category label ships from it

Classification

machine, unvalidated

Machine predicted; a candidate call from one source (direct Gemma or distilled Codex), not a consensus.

The models applied no category: nothing in the taxonomy fit this work.
Study designTheoretical or conceptual
Domainnot available
GenreEmpirical

How this classification was reached, model by model and score by score, is at the end of the page under "How this classification was reached".

Quick stats

Citations0
Published2023
Admission routes1
Has abstractyes

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