Wilfond,: search on Z-Library

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1

Relationships help make life worth living

Wightman, Aaron, Wilfond, Benjamin S, Diekema, Douglas, Paquette, Erin, Shah, Seema

Journal:

Journal of Medical Ethics

Year:

2020

Language:

english

File:

PDF, 124 KB

english, 2020

2

Rethinking the “open future” argument against predictive genetic testing of children

Garrett, Jeremy R., Lantos, John D., Biesecker, Leslie G., Childerhose, Janet E., Chung, Wendy K., Holm, Ingrid A., Koenig, Barbara A., McEwen, Jean E., Wilfond, Benjamin S., Brothers, Kyle

Journal:

Genetics in Medicine

Year:

2019

Language:

english

File:

PDF, 339 KB

english, 2019

3

Assent in Research: The Voices of Adolescents

Grady, Christine, Wiener, Lori, Abdoler, Emily, Trauernicht, Emily, Zadeh, Sima, Diekema, Douglas S., Wilfond, Benjamin S., Wendler, David

Journal:

Journal of Adolescent Health

Year:

2014

Language:

english

File:

PDF, 342 KB

english, 2014

4

The ethics and regulatory landscape of including vulnerable populations in pragmatic clinical trials

Welch, M. J., Lally, R., Miller, J. E., Pittman, S., Brodsky, L., Caplan, A. L., Uhlenbrauck, G., Louzao, D. M., Fischer, J. H., Wilfond, B.

Journal:

Clinical Trials

Year:

2015

Language:

english

File:

PDF, 137 KB

english, 2015

5

Lethal Language, Lethal Decisions

Tracy K. Koogler, Benjamin S. Wilfond and Lainie Friedman Ross

Journal:

Hastings Center Report

Year:

2003

Language:

english

File:

PDF, 74 KB

english, 2003

6

Patient actions and reactions after receiving negative results from expanded carrier screening

Kraft, S.A., Schneider, J.L., Leo, M.C., Kauffman, T.L., Davis, J.V., Porter, K.M., McMullen, C.K., Wilfond, B.S., Goddard, K.A.B.

Journal:

Clinical Genetics

Year:

2018

Language:

english

File:

PDF, 1.19 MB

english, 2018

7

Pediatric clinical exome/genome sequencing and the engagement process: encouraging active conversation with the older child and adolescent: points to consider—a statement of the American College of Medical Genetics and Genomics (ACMG)

Bush, Lynn W, Bartoshesky, Louis E, David, Karen L, Wilfond, Benjamin, Williams, Janet L, Holm, Ingrid A

Journal:

Genetics in Medicine

Year:

2018

Language:

english

File:

PDF, 87 KB

english, 2018

8

“I don’t want to be Henrietta Lacks”: diverse patient perspectives on donating biospecimens for precision medicine research

Lee, Sandra S.-J., Cho, Mildred K., Kraft, Stephanie A., Varsava, Nina, Gillespie, Katie, Ormond, Kelly E., Wilfond, Benjamin S., Magnus, David

Journal:

Genetics in Medicine

Year:

2018

Language:

english

File:

PDF, 258 KB

english, 2018

9

Points to Consider: Ethical, Legal, and Psychosocial Implications of Genetic Testing in Children and Adolescents

Botkin, Jeffrey R., Belmont, John W., Berg, Jonathan S., Berkman, Benjamin E., Bombard, Yvonne, Holm, Ingrid A., Levy, Howard P., Ormond, Kelly E., Saal, Howard M., Spinner, Nancy B., Wilfond, Benjami

Journal:

The American Journal of Human Genetics

Year:

2015

Language:

english

File:

PDF, 309 KB

english, 2015

10

Discordant Patient and Clinician Perspectives on the Potential Value of Genetic Services in Safety-Net Clinics

McMullen, Carmit, Holup, Joan, Davis, James V., Foley, Perry, Jacob, Lorie, Cottrell, Erika, Bui, David P., Wilfond, Benjamin, Goddard, Katrina A.B.

Journal:

Journal of Health Care for the Poor and Underserved

Year:

2020

File:

PDF, 2.20 MB

2020

11

The Relational Potential Standard: Rethinking the Ethical Justification for Life-Sustaining Treatment for Children with Profound Cognitive Disabilities

Wightman, Aaron, Kett, Jennifer, Campelia, Georgina, Wilfond, Benjamin S.

Journal:

Hastings Center Report

Year:

2019

Language:

english

File:

PDF, 253 KB

english, 2019

12

Expanded Access for Nusinersen in Patients With Spinal Muscular Atropy: Negotiating Limited Data, Limited Alternative Treatments, and Limited Hospital Resources

Wilfond, Benjamin S., Morales, Christian, Taylor, Holly A.

Journal:

American Journal of Bioethics

Year:

2017

Language:

english

File:

PDF, 418 KB

english, 2017

13

Bringing Social Context Into the Conversation About Pediatric Long-term Ventilation

Henderson, Carrie M., S. Wilfond, Benjamin, Boss, Renee D.

Journal:

Hospital Pediatrics

Year:

2018

Language:

english

File:

PDF, 830 KB

english, 2018

14

Waiving informed consent in newborn screening research: Balancing social value and respect

Beth A. Tarini, Wylie Burke, C. Ronald Scott, Benjamin S. Wilfond

Journal:

American Journal of Medical Genetics Part C: Seminars in Medical Genetics

Year:

2008

Language:

english

File:

PDF, 125 KB

english, 2008

15

The Invisible Hand in Clinical Research: The Study Coordinator's Critical Role in Human Subjects Protection

Arlene M. Davis, Sara Chandros Hull, Christine Grady, Benjamin S. Wilfond, Gail E. Henderson

Journal:

The Journal of Law, Medicine & Ethics

Year:

2002

Language:

english

File:

PDF, 1.48 MB

english, 2002

16

Ethical Considerations About Observational Research in Children

Wilfond, Benjamin

Journal:

The Journal of Trauma Injury Infection and Critical Care

Year:

2007

Language:

english

File:

PDF, 231 KB

english, 2007

17

Research Consent at the Age of Majority: Preferable but not Obligatory

Brothers, Kyle B., Wilfond, Benjamin S.

Journal:

Year:

2018

Language:

english

File:

PDF, 1005 KB

english, 2018

18

Navigating Growth Attenuation in Children with Profound Disabilities : Children's Interests, Family Decision-Making, and Community Concerns

Benjamin S. Wilfond, Paul Steven Miller, Carolyn Korfiatis, Douglas S. Diekema, Denise M. Dudzinski, Sara Goering, Seattle Growth Attenuation, Ethics Working Group

Journal:

Hastings Center Report

Year:

2010

Language:

english

File:

PDF, 427 KB

english, 2010

19

Challenging Cases in Research Ethics

Taylor, Holly A., Kuwana, Ellen, Wilfond, Benjamin S.

Journal:

American Journal of Bioethics

Year:

2014

Language:

english

File:

PDF, 41 KB

english, 2014

20

The Emergence of Clinical Research Ethics Consultation: Insights From a National Collaborative

Porter, Kathryn M., Danis, Marion, Taylor, Holly A., Cho, Mildred K., Wilfond, Benjamin S.

Journal:

American Journal of Bioethics

Year:

2018

Language:

english

File:

PDF, 651 KB

english, 2018

21

Ethical challenges in research with orphans and vulnerable children: a qualitative study of researcher experiences

Kelley, Maureen C., Brazg, Tracy, Wilfond, Benjamin S., Lengua, Liliana J., Rivin, Beth E., Martin-Herz, Susanne P., Diekema, Douglas S.

Journal:

International Health

Year:

2016

Language:

english

File:

PDF, 228 KB

english, 2016

22

Does the current consent process minimize the risks of genetics research?

Dave Wendler, Kiran Prasad, Benjamin Wilfond

Journal:

American Journal of Medical Genetics Part A

Year:

2002

Language:

english

File:

PDF, 54 KB

english, 2002

23

What Does It Mean To Be Identifiable?

Hull, Sara Chandros, Wilfond, Benjamin S.

Journal:

American Journal of Bioethics

Year:

2008

Language:

english

File:

PDF, 41 KB

english, 2008

24

Research use of leftover newborn bloodspots: Attitudes of Canadian geneticists regarding storage and informed consent requirements

Richer, Julie, Ghebremichael, Musie S, Chudley, Albert E, Robinson, Walter M, Wilfond, Benjamin S, Solomon, Mildred Z

Journal:

Genetics in Medicine

Year:

2011

File:

PDF, 1.25 MB

2011

25

Ethical Considerations for Unblinding a Participant’s Assignment to Interpret a Resolved Adverse Event

Wilfond, Benjamin S., Morales, Christian, Johnson, Liza-Marie, Taylor, Holly A.

Journal:

American Journal of Bioethics

Year:

2018

Language:

english

File:

PDF, 778 KB

english, 2018

26

Exploring Parental Decision Making Regarding Long-Term Ventilation for Children with and Without Severe Neurological Impairment (RP408)

Munjapara, Vasu, Boss, Renee, Wilfond, Benjamin, Henderson, Carrie, Raisanen, Jessica, Shipman, Kelly, Jabre, Nicholas, Bogetz, Jori

Journal:

Journal of Pain and Symptom Management

Year:

2020

File:

PDF, 114 KB

2020

27

Disclosing Individual Genetic Results to Research Participants

Ravitsky, Vardit, Wilfond, Benjamin S.

Journal:

American Journal of Bioethics

Year:

2006

Language:

english

File:

PDF, 901 KB

english, 2006

28

Characterisation of organisational issues in paediatric clinical ethics consultation: a qualitative study

Opel, D J, Wilfond, B S, Brownstein, D, Diekema, D S, Pearlman, R A

Journal:

Journal of Medical Ethics

Year:

2009

Language:

english

File:

PDF, 139 KB

english, 2009

29

Research Participants' Perspectives on Genotype-Driven Research Recruitment

Beskow, Laura M., Namey, Emily E., Cadigan, R. Jean, Brazg, Tracy, Crouch, Julia, Henderson, Gail E., Michie, Marsha, Nelson, Daniel K., Tabor, Holly K., Wilfond, Benjamin S.

Journal:

Journal of Empirical Research on Human Research Ethics An International Journal

Year:

2011

Language:

english

File:

PDF, 193 KB

english, 2011

30

Engaging children in genomics research: decoding the meaning of assent in research

Wilfond, Benjamin S., Diekema, Douglas S.

Journal:

Genetics in Medicine

Year:

2012

Language:

english

File:

PDF, 245 KB

english, 2012

31

Challenging Cases in Research Ethics

Taylor, Holly A., Kuwana, Ellen, Wilfond, Benjamin S.

Journal:

American Journal of Bioethics

Year:

2015

Language:

english

File:

PDF, 28 KB

english, 2015

32

Ethical Assessment of Clinical Asthma Trials Including Children Subjects

Coffey, M. J., Wilfond, B., Ross, L. F.

Journal:

Year:

2004

Language:

english

File:

PDF, 277 KB

english, 2004

33

Responding to parental requests for life-sustaining treatment… relational potential revisited

Wightman, Aaron, Kett, Jennifer Cobelli, Wilfond, Benjamin

Journal:

Acta Paediatrica

Year:

2017

Language:

english

File:

PDF, 526 KB

english, 2017

34

Informed consent for a neonatal clinical trial: parental experiences and perspectives

Shah, Anita R., Wilfond, Benjamin S., Silvia, Amy, Hancuch, Kerry, Woodrum, David, Heagerty, Patrick, Ohls, Robin K., Courtney, Sherry E., Frantz, Ivan D., Gogcu, Semsa, Bishop, Christine E., Ahmad, K

Journal:

Journal of Perinatology

Year:

2018

Language:

english

File:

PDF, 416 KB

english, 2018

35

Conflicts of Interest and Distribution of Resources to Community Partners: An Organizational Ethics Dilemma

Cole, Allison M., Baldwin, Laura-Mae, Keppel, Gina A., Kuwana, Ellen, Mollis, Brenda L., Wilfond, Benjamin S.

Journal:

Progress in Community Health Partnerships Research Education and Action

Year:

2017

Language:

english

File:

PDF, 1.39 MB

english, 2017

36

The Ashley Case: The Public Response and Policy Implications

Benjamin S. Wilfond

Journal:

Hastings Center Report

Year:

2007

Language:

english

File:

PDF, 70 KB

english, 2007

37

Emerging Ethical Issues in Pharmacogenomics

Dr Carol L. Freund,Benjamin S. Wilfond

Journal:

American Journal of PharmacoGenomics

Year:

2002

Language:

english

File:

PDF, 165 KB

english, 2002

38

The Cystic Fibrosis Gene: Medical and Social Implications for Heterozygote Detection

Wilfond, Benjamin S.

Journal:

JAMA The Journal of the American Medical Association

Year:

1990

Language:

english

File:

PDF, 1.29 MB

english, 1990

39

From Genetics to Genomics: Ethics, Policy, and Parental Decision-making

Wilfond, B., Ross, L. F.

Journal:

Journal of Pediatric Psychology

Year:

2009

Language:

english

File:

PDF, 99 KB

english, 2009

40

Is “incidental finding” the best term?: a study of patients’ preferences

Tan, Nina, Amendola, Laura M., O’Daniel, Julianne M., Burt, Amber, Horike-Pyne, Martha J., Boshe, Lacey, Henderson, Gail E., Rini, Christine, Roche, Myra I., Hisama, Fuki M., Burke, Wylie, Wilfond, Be

Journal:

Genetics in Medicine

Year:

2016

Language:

english

File:

PDF, 570 KB

english, 2016

41

Participant Engagement in Translational Genomics Research: Respect for Persons—and Then Some

Childerhose, Janet E., Finnila, Candice R., Yu, Joon‐Ho, Koenig, Barbara A., McEwen, Jean, Berg, Stacey L., Wilfond, Benjamin S., Appelbaum, Paul S., Brothers, Kyle B.

Journal:

Ethics & Human Research

Year:

2019

File:

PDF, 878 KB

2019

42

Ethical and clinical practice considerations for genetic counselors related to direct-to-consumer marketing of genetic tests

Christopher H. Wade, Benjamin S. Wilfond

Journal:

American Journal of Medical Genetics Part C: Seminars in Medical Genetics

Year:

2006

Language:

english

File:

PDF, 143 KB

english, 2006

43

Cosmetic Surgery in Children with Cognitive Disabilities: Who Benefits? Who Decides?

DOUGLAS J. OPEL, BENJAMIN S. WILFOND

Journal:

Hastings Center Report

Year:

2009

Language:

english

File:

PDF, 71 KB

english, 2009

44

Assessing Benefits in Clinical Research: Why Diversity in Benefit Assessment Can Be Risky

Larry R. Churchill, Daniel K. Nelson, Gail E. Henderson, Nancy M. P. King, Arlene M. Davis, Erin Leahey and Benjamin S. Wilfond

Journal:

IRB Ethics and Human Research

Year:

2003

Language:

english

File:

PDF, 2.27 MB

english, 2003

45

G.P.303

Peay, H.L., Scharff, H., Biesecker, B.B., Wilfond, B.S., Johnson, J., Escolar, D.M., Nagaraju, K., Piacentino, J., Bowie, J., Tibben, A.

Journal:

Neuromuscular Disorders

Year:

2014

Language:

english

File:

PDF, 55 KB

english, 2014

46

Contrasting Views of Risk Perception and Influence of Financial Compensation Between Adolescent Research Participants and Their Parents

Wiener, L., Viola, A., Wilfond, B. S., Wendler, D., Grady, C.

Journal:

Journal of Empirical Research on Human Research Ethics An International Journal

Year:

2015

Language:

english

File:

PDF, 312 KB

english, 2015

47

Navigating Parental Permission for Neonatal Research

Taylor, Holly A., Kuwana, Ellen, Wilfond, Benjamin S.

Journal:

American Journal of Bioethics

Year:

2015

Language:

english

File:

PDF, 32 KB

english, 2015

48

Professionally Responsible Disclosure of Genomic Sequencing Results in Pediatric Practice

McCullough, L. B., Brothers, K. B., Chung, W. K., Joffe, S., Koenig, B. A., Wilfond, B., Yu, J.-H.

Journal:

Year:

2015

Language:

english

File:

PDF, 665 KB

english, 2015

49

Newborn Screening for Cystic Fibrosis: Evaluation of Benefits and Risks and Recommendations for State Newborn Screening Programs

Scott D. Grosse, Coleen A. Boyle, Jeffrey R. Botkin, Anne Marie Comeau, Martin Kharrazi, Margaret Rosenfeld and Benjamin S. Wilfond

Journal:

Morbidity and Mortality Weekly Report: Recommendations and Reports

Year:

2004

Language:

english

File:

PDF, 44.67 MB

english, 2004

50

Methodological and Ethical Issues in Pediatric Medication Safety Research

Carpenter, Delesha, Gonzalez, Daniel, Retsch-Bogart, George, Sleath, Betsy, Wilfond, Benjamin

Journal:

Year:

2017

Language:

english

File:

PDF, 680 KB

english, 2017

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