Questioning the Need for Informed Consent: A Case Study of California's Experience with a Pilot Newborn Screening Research Project

2007 ◽  
Vol 2 (3) ◽  
pp. 3-14 ◽  
Author(s):  
Lisa Feuchtbaum ◽  
George Cunningham ◽  
Stan Sciortino
Keyword(s):  
Informed Consent ◽  
Newborn Screening ◽  
Genetic Disease ◽  
New Technology ◽  
Severe Disabilities ◽  
Pilot Test ◽  
Parental Consent ◽  
Study Participation ◽  
Consent Procedure

California provides mandatory newborn screening for disorders that cause irreversible, severe disabilities if not identified and treated early in life. Parental consent is not required. In 2001, the Genetic Disease Branch was mandated to pilot test a new technology that could identify many additional disorders using the same blood specimen already collected. Study participation required informed consent, which was obtained for 47% of births during the study timeframe. The inability of hospitals to carry out the consent procedure for all newborns resulted in denial of testing and missed cases. If informed consent were waived, all newborns could have been tested. Several empirical questions are posed and each is examined from the perspective of society, the parents and the newborn. It is concluded that the legitimate needs of society and the interests of newborns should not be sacrificed to respond to the autonomy interests of the few parents who did not wish their infant to participate in the study, and that in the future, parental consent should be waived for projects evaluating new screening technologies.

Effect of Informed Parental Consent on Mothers' Knowledge of Newborn Screening

PEDIATRICS ◽  
1983 ◽  
Vol 72 (6) ◽  
pp. 807-812 ◽  
Author(s):  
Neil A. Holtzman ◽  
Ruth Faden ◽  
A. Judith Chwalow ◽  
Susan D. Horn
Keyword(s):  
Informed Consent ◽  
Newborn Screening ◽  
Metabolic Disorders ◽  
Knowledge Score ◽  
Low Risk ◽  
Parental Consent ◽  
Powerful Predictor ◽  
New Mothers ◽  
The Mean ◽  
Informed Parental Consent

To determine whether knowledge was improved as a result of obtaining informed consent from parents for newborn screening of their infants for phenylketonuria (PKU) and other hereditary metabolic disorders, new mothers in seven Maryland hospitals were interviewed either before receiving a standard disclosure (n = 210) or after giving consent (n = 418). The mean knowledge score of the women interviewed after giving consent was significantly higher (P < .001). Receiving the disclosure was a more powerful predictor of knowledge score, accounting for 40% of the variance, than demographic factors, which accounted for 9%. Women whose consent was obtained just prior to discharge tended to have lower knowledge scores than women whose consent was obtained earlier (P = .03). Women with higher knowledge scores were somewhat less likely to favor consent than women with lower scores. Although consent may not be appropriate for some low-risk procedures, informing parents can be easily and inexpensively accomplished.

Genetics and the Law

2021 ◽  
Author(s):  
Maxwell Mehlman ◽  
Mette Hartlev ◽  
Sonia Suter
Keyword(s):  
United States ◽  
Gene Therapy ◽  
Informed Consent ◽  
Newborn Screening ◽  
Screening Program ◽  
The United States ◽  
Parental Consent ◽  
Genetic Sequencing ◽  
Opt Out ◽  
Genetic Technologies

This chapter explores the similarities and differences in the legal approaches in the United States and Europe to genetic issues. Both the United States and Europe value informed consent and autonomy in this context. As a result, individuals must give informed consent to genetic testing and can decide to opt out of being informed by their health professionals about genetic sequencing results, including results that are clinically relevant. All states in the United States conduct newborn screening using DNA samples, and most do so without parental consent. In Europe, most countries have a newborn screening program, and most of these require parental consent. The chapter also looks at the legal approaches to genetic discrimination, as well as human gene therapy and gene therapy research. As genetic technologies continue to evolve, the United States and Europe will likely continue to face similar ethical and legal issues regarding the regulation of that genetic technology. However, their approaches will likely overlap in some ways and diverge in others, reflecting differences in the legal structures and cultures of each jurisdiction.

New Technology May Expand Newborn Screening

2005 ◽  
Vol 39 (4) ◽  
pp. 43
Author(s):  
MARK S. LESNEY
Keyword(s):  
Newborn Screening ◽  
New Technology

Blockchain in Supply Chain: Case Study of Lottemart Ciputat

2019 ◽  
Vol 5 (1) ◽  
pp. 38-49 ◽  
Author(s):  
B. K. Handoyo ◽  
M. R. Mashudi ◽  
H. P. Ipung
Keyword(s):  
Decision Making ◽  
Supply Chain ◽  
Supply Chain Management ◽  
Information Asymmetry ◽  
New Technology ◽  
Business Case ◽  
Analysis Method ◽  
Chain Management ◽  
Production Processes

Current supply chain methods are having difficulties in resolving problems arising from the lack of trust in supply chains. The root reason lies in two challenges brought to the traditional mechanism: self-interests of supply chain members and information asymmetry in production processes. Blockchain is a promising technology to address these problems. The key objective of this paper is to present qualitative analysis for blockchain in supply chain as the decision-making framework to implement this new technology. The analysis method used Val IT business case framework, validated by the expert judgements. The further study needs to be elaborated by either the existing organization that use blockchain or assessment by the organization that will use blockchain to improve their supply chain management.

IMPLEMENTASIROTTERDAM CONVENTION ON THE PRIOR INFORMED CONSENT PROCEDURE FOR CERTAIN HAZARDOUS CHEMICALS AND PESTICIDES IN INTERNATIONAL TRADEBAGI PERKEMBANGAN HUKUM LINGKUNGAN DI INDONESIA

2019 ◽  
Vol 5 (1) ◽  
pp. 90
Author(s):  
Elly Kristiani Purwendah ◽  
Elisabet Pudyastiwi
Keyword(s):  
Informed Consent ◽  
Hazardous Chemicals ◽  
Informed Consent Procedure ◽  
Prior Informed Consent ◽  
Consent Procedure

Konvensi ini memang tidak langsung memberikan efek yang signifikan namun dengan meratifikasi konvensi ini akan memberikan pengaruh terhadap kelangsungan ekspor bahan mentah terlebih sumber daya alam seperti bahan obat-obatan, bahan pangan dan bahan lainnya yang terkontaminasi oleh bahan kimia dan pestisida berbahaya. Ratifikasi konvensi ini akan mempersempit kemungkinan menurunnya kualitas keanekaragaman hayati yang sering dimanfaatkan untuk kebutuhan hidup. Selain itu adanya konvensi ini akan mencegah munculnya masalah terhadap lapangan pekerjaan bagi pihak-pihak yang terkontaminasi limbah maupun bahan kimia dan pestisida yang berbahaya seperti para petani, nelayan dan masyarakat pada umumnya. Jika ditelaah secara mendalam jumlah ekpor pada sektor pertanian setiap tahun terus mengalami penurunan, hal ini disebabkan oleh menurunya kualitas ekosistem persawahan akibat pemakaian pestisida yang berlebihan. Kata kunci : Konvensi Rotterdam, ratifikasi, hukum lingkungan. 

How do social skills enable nascent entrepreneurs to enact perseverance strategies in the face of challenges? A comparative case study of success and failure

2014 ◽  
Vol 20 (6) ◽  
pp. 517-541 ◽  
Author(s):  
Wadid Lamine ◽  
Sarfraz Mian ◽  
Alain Fayolle
Keyword(s):  
Social Skills ◽  
New Technology ◽  
New Ventures ◽  
Nascent Entrepreneurs ◽  
Entrepreneurial Process ◽  
Ongoing Research ◽  
Content Type ◽  
Start Up ◽  
The Impact

Purpose – This paper seeks to advance ongoing research in entrepreneurial perseverance. While the concept of perseverance is not new, few researchers paid attention to behavioural persistence in the entrepreneurial context. The purpose of this paper is to explore the emergence of new technology based firms (NTBF) by focusing on the role of nascent entrepreneurs’ social skills in the meeting the changes of entrepreneurial perseverance. Design/methodology/approach – In this paper the authors study the start-up phase of entrepreneurial process. The authors opted for a longitudinal case study approach in order to enhance the knowledge on entrepreneurs’ social skills and perseverance. For triangulation purpose the data were gathered using four different information sources. The use of Nvivo8 as the data analysis tool helped to impose a discipline and structure which facilitated the extraction of core insights. Findings – This paper contributes to the understanding of the entrepreneurial perseverance in the context of new venture creation. Particularly, reading the entrepreneurial process through the lens of the perseverance strategies model (Van Gelderen, 2012) provided a way to identify and then to assess the impact of the social skills on the overall entrepreneurial perseverance and their combined impact on the performance of NTBF creation process. In doing so, the authors identify the impact of entrepreneurs’ social skills to deal with a series of entrepreneurial problems such as scarcity of resources, uncertainty and ambiguity and consequently their impact on the likelihood of survival for new ventures. The issues that arose mostly reflected the inherent complexity of technology transfer processes, the university and entrepreneurs’ diverging cultures, and the very characteristics of the start-up phase of NTBFs. The findings reveal how social skills impact the entrepreneurial paths and probable outcomes. Research limitations/implications – This paper contributes to the understanding of the entrepreneurial perseverance in the context of NTBF creation. The findings reveal how social skills and perseverance impact the entrepreneurial paths and probable outcomes. Practical implications – The paper has implications for entrepreneurial support mechanisms such as technology business incubators in helping them to improve the efficacy and efficiency of their assistance to entrepreneurs through the development of their skill-sets and perseverance and providing enabling networking. In addition, the research has implications for entrepreneurship education and training. Indeed, there is an urgent need to design and implement courses and programs aiming at developing soft skills in entrepreneurship. Originality/value – In exploring networking and issues of perseverance for nascent entrepreneurs operating in new technology-based sectors, which the authors consider as an under searched area in entrepreneurial literature.

Introducing the Application of Hybrid Gas and Sand Control in Sucker Rod Pump (SRP) Case Study Old Rimau Mature Field South Sumatera

2021 ◽  
Author(s):  
P. R. Safiraldi
Keyword(s):  
New Technology ◽  
Middle Section ◽  
Hybrid Device ◽  
Sand Control ◽  
Sucker Rod ◽  
Sucker Rod Pump ◽  
Gas Separator ◽  
Mature Field ◽  
Sandstone Reservoir

Objective/Scope: Challenges of sucker rod pumping operation in high gas and solid production;The implementation of integrated down-hole gas and solid separation in one device. Method procedure/processes: Old Rimau Fields in South Sumatera produce oil from sandstone reservoir with GOR above 800 scf/stb and solid production resulted from fracturing proppant flow back. Due to these conditions, some problems such as gas lock or interference, pump leakage, and rod parted were discovered which resulting in low SRP run life. The installation of sand screen and gas anchor has been implemented to encounter this issue. However, this initiative still ineffective due to limited conditions. If the sand screen was installed to control the sand, then the gas anchor to control the gas could not be installed and vice versa.Results, observations, conclusions: Integrated solid and gas handling called "hybrid" device has been introduced. The device is connected directly at the bottom of down-hole pump consist of three section, the upper section for intake and gas separator, the middle section for gas and solid separator, and lower one for solid container. The first utilization was conducted in three SRP wells, which are KG-09, LKP-21, and KG-10. Previously, these wells were shut-in due to down-hole problem. After installing the device while well service, the SRP run normally to produce the oil. The increasing of pump load performance was also obtained, indicated by the dyna card. At this time, the SRP is still running and run life is still under surveillance. This paper will explain the new technology end-to-end implementation of the integrated down-hole sand and gas control in one device for Sucker Rod Pump (SRP) system.

Understanding the influence of technological capability and exogenous pressure on business model dynamics: insights from a longitudinal case study

2021 ◽  
Vol ahead-of-print (ahead-of-print) ◽  
Author(s):  
Jingqin Su ◽  
Shuai Zhang ◽  
Huanhuan Ma
Keyword(s):  
Business Model ◽  
New Technology ◽  
Innovation Process ◽  
Technological Capability ◽  
Future Research ◽  
Longitudinal Case Study ◽  
Content Type ◽  
Research Stream ◽  
Over Time

PurposeThe purpose of the study is to explore how technological capability and exogenous pressure interactively influence business model (BM) dynamics over time in new technology-based ventures.Design/methodology/approachThe study adopts a longitudinal case study of the BM innovations of a Chinese financial technology venture. The structural approach and temporal bracket are used to analyze and theorize the data.FindingsThe findings indicate that distinct contextual changes impel a firm to refine or abandon existing BMs over time. In different stages, the antecedents interactively influence BM dynamics with three successive patterns, namely pressure dominance, parallel influence and hybrid influence. While both antecedents trigger changes during the initiation and implementation of new BMs, they also serve as the filter and the enabler, respectively, during the ideation and integration of BMs.Research limitations/implicationsThe study inductively develops three propositions regarding the relationship between BM dynamics and its antecedents, which is based on the data collected from one single firm. Future research should test the propositions in other domains and take more cross-level antecedents into consideration.Originality/valueThe study contributes to the nascent research stream of BM dynamics by offering in-depth insights into the interaction of internal and external antecedents and by linking the differentiated roles of antecedents to the BM innovation process. The research offers some practical implications for new technology-based ventures seeking to develop BMs in a fast-changing environment.

Sign in / Sign up

Export Citation Format

Share Document